Teaching Without Trust: How Scripted Lessons Undermine Learning

Asking teachers to read directly from a scripted curriculum is like asking artists to ‘paint by numbers.’

Schools and school districts spend a lot of money on scripted curricula. They often tout that these scripts make sure every student learns the same material in the same way. Some people defend scripted lessons. They say, “It saves teachers time.” “You don’t have to be an expert to teach it.” “Parents and administrators can relax knowing everyone’s teaching the same thing.” They only see the positive side.

But those who support scripted curricula often overlook the many negatives — the ways that teaching from scripts minimizes students’ learning experiences and reduces the quality of education they receive.

Teachers are trained professionals who spend four to six years, at minimum, learning how to design lessons that meet the needs of all learners. Teachers understand a basic truth: what works beautifully for one group of students might fall flat or completely fail with another. Every class has its own rhythm, interests, and challenges. Different groups have different levels of background knowledge, learning styles, and ways of engaging with the material.

Scripted lessons often teach to the “average” student, completely missing the mark for those who need more challenge or additional support. They also assume that every student begins with the same background knowledge, which is rarely the case.

Background knowledge refers to the information, experiences, and vocabulary that students bring with them to the classroom. For example, students who live in inner-city environments may have little experience with rural life, while those in rural areas may not understand urban experiences. Urban students may not relate to tractors, livestock, or harvesters. Rural students may struggle to imagine riding a subway, taking a taxi to school, or living in a high-rise apartment. Scripted lessons ignore these differences and assume that every child shares the same frame of reference.

When teachers are required to read from scripts, it lowers teaching to the lowest common denominator. It sends the message that teachers cannot be relied upon to provide engaging, intellectually stimulating instruction without reading from a prewritten script or that they are not professionally knowledgeable enough to do so. It also makes the unfair assumption that teachers have hidden agendas or are trying to do something inappropriate in the classroom.

Most of all, it implies that teachers cannot be trusted to teach accurately and must be controlled by others “higher up” in order to do their jobs correctly. This approach allows administrators and community members with particular agendas to dictate exactly what is said and how it is said in every classroom. It creates a system built on micromanagement rather than professional trust, reducing teachers to mere ‘script readers’ instead of skilled professionals.

Scripts also prevent what teachers call teachable moments. These are the times when a student asks an insightful question or makes a thoughtful observation that opens the door to deeper learning. These moments are often the most powerful and memorable parts of education. Scripted lessons destroy them by requiring teachers to stay on the page instead of following genuine curiosity and discovery.

When a teacher is required to use a program exactly as written, without any changes or adaptations, it is called “teaching with fidelity.” When teaching is reduced to reading word-for-word from a script, with no differentiation, no enrichment, and no flexibility, we might as well have students listen to a recording. It strips away the teacher’s unique contributions—their knowledge, creativity, and ability to connect lessons to students’ lives. It removes everything that makes learning meaningful and memorable.

I once worked in a school that required us to follow five separate language arts scripts within a single 1 hour and 50 minute reading block, timed down to the minute. Four minutes for one program, twelve for the next, and so on. If a student did not understand something, we were told simply to reread the section of the script, not to explain it in another way that might actually help them. To keep students “engaged,” we were told to have them move between the carpet and their desks between scripts. This was supposed to provide movement and reduce boredom, but it did little to achieve either.

We were required to follow these scripts “with fidelity,” meaning no changes, no additions, no enrichment, and definitely no creativity.

And for anyone who believes this approach saves time, it does not. We still had to write complete lesson plans with learning objectives, standards, assessments, and reteaching plans, even though we could not use our own ideas. We could not simply note the assigned page numbers or materials. Each week, teachers were still required to submit detailed six-page lesson plans by Friday afternoon.

If scripted lessons are truly the best way to teach, then why not sit students in front of a screen and have them watch one teacher read the script written for the entire nation? Because that is not how children learn. Real learning happens when a trained, experienced teacher observes how students respond, adjusts in the moment, reacts and reteaches based on student questions, and finds creative ways to make lessons engaging and relevant.

Teaching is both an art and a science. Scripts take away both.
When teachers are trusted to teach authentically, they bring lessons to life. They build curiosity, adapt to each student’s needs, and create connections that last long after the test is over. The best classrooms are living, breathing spaces where knowledge grows through interaction, trust, and discovery, not through reciting someone else’s words.

When the Storm Changes You

For my dearest friend, who has walked with me through every storm, and whose steadiness has held me through every season. As you walk through the storm, just know that I am here.

Jan Mariet 11/21/2025

Even surrounded by people you love, illness is very isolating. You carry an experience in your body that no one else can feel. You learn to speak in metaphors because reality is too complex to describe. You are trapped in a body that keeps failing you in quiet, relentless ways, and you know it isn’t the real you.

You grieve for the life you had.  You didn’t even realize how wonderful it was until it was gone.  You put on the brave face of acceptance, even though you feel like everything is falling apart.  You feel invisible and too visible at the same time.

You haven’t found the words yet to describe how you feel, what is happening to you, and you can’t even conceive how life will continue.  You just know it will.  And you aren’t sure you are even happy about that. 

You try not to talk about it, because if you don’t say the words, you can pretend things aren’t that much changed.  But you know, whether you speak it or not, that things are forever changed, and you aren’t sure how to deal with it.

You envision acceptance as reaching the peak of a mountain, shouting to the sky, and everything being completely, gloriously okay again.  But acceptance is a rhythm, something that ebbs and flows, not a climactic moment of achievement or success.

You don’t ‘arrive.’ You adjust. Until the next realization hits you like an unexpected wave that crashes over you, one you never saw forming. So, you stand back up. You adjust again… over and over again…as many times as it takes.

People rarely talk about this:  good days can be terrifying, because every good day comes with the questions: “What will I lose next?” and “Is this the last time I’ll feel this good?”

There is grief in joy, and fear in hope.  Sometimes, it is much safer to just keep putting one foot in front of the other without any expectation.  It’s safer to tell others, “I’m fine,” or “I’m managing,” because even speaking the words of how you actually feel makes it all too real.

Acceptance isn’t a destination; it is a rolling wave – sometimes gentle and sometimes hitting so hard with a painful sting that knocks you completely off your feet.  How could anyone who’s never seen the ocean even understand?

Illness rearranges your identity like a puzzle someone shook before opening.  Everything is a jumble, many of the pieces are wrong-side up, and it takes such a long time to right them before you can even start to see the picture.

Illness leaves you wondering so many things.  “Who am I if I can’t work the way I used to?”  “Who am I if my body doesn’t cooperate?”  “Who am I if I need help?”  “Who am I when I can’t help because my own needs take precedence?” “Who am I when I can’t do what made me me?”  It’s not just physical loss. It’s the unraveling of who you thought you were.

And when your faith needs to be unshakable, while you still show the world the light that has shone through you since the beginning of your days, a gale inside of you goes from rustling, to screaming, “Where has the love of God gone?” while you stand strong against it, and fear being overcome by it, all at the same time.  And you feel shame and weakness for even wondering.  Your thoughts and faith are in a whirl, like a swirl of autumn leaves against an unexpected wind.

You have lost an entire version of yourself: the routines that guide you, the independence that freed you, the you that didn’t have to ask for help, the you who could trust her body.   There’s grief for the life you had, but there is also grief for the life you thought you’d have, and that second one hurts most of all.

You miss being the one who was always called upon to help, and despise the you who now needs to ask for help, to the point you muddle on, completely denying that you do need help, need time and space to adapt, and yet, hate having to do that.

You are going through a long stage where you pretend you’re fine with it, pretend you’ve embraced the new life, and even believe you’ve moved on.  But really, you’re in grief, wearing the ‘I’m fine” mask, trying toconvince everyone, including yourself, that you’re doing okay.  Because admitting the truth feels too big, too heavy, too final.

The reality of illness lands hard, no matter what, and living with it can be anything from gentle ripples to raging sea, all within moments. For now, listen to the voice you can bear to hear.  Live the reality you can tolerate for now, even if it means wearing a mask and feigning total acceptance in between tears of doubt explained away as allergies to the dust we see through stray beams of sunlight.

There’s that strange, suspended moment when you stop asking “How long until I get better?” and start asking “How do I live like this?”  It feels like your brain switches tracks, from “temporary setback” to “permanent reality”, and you can’t unknow it.  It’s not acceptance.  It’s not peace. It’s awareness, and it lands hard.

It does come. Then the storm fades into a new ebb and flow of tide and wind. You learn to live in it, not because of your courage or faith, but simply because it is, in the end, the only option other than defeat. You don’t rise above it; you simply learn to exist inside it, until it becomes the rhythm of your own beating heart.

Why I Wrote “The Good Old Days — But For Whom”

Most of what I write, whether it’s a story, article, or book, comes from something I’ve lived through in one way or another. My recent piece about the so-called “good old days” in education, when children sat in rows, listened to their teachers, and followed the rules, comes directly from my own school memories of the late 1960s and early 1970s.

But that era so many people romanticize left out an entire group of children. Before 1975, students with physical or intellectual disabilities had no federal legal right to a public education in the United States. Yes, education has always been governed by the states, and a few had limited special programs—but most children with disabilities were simply excluded.

If a child didn’t “appear” to have an IQ of at least 70, they were often turned away at the schoolhouse door. And even for those who might have qualified, schools weren’t required to be accessible. There were no ramps, no elevators, no accessible bathrooms, no accommodations.

The rights and protections we take for granted today are only about fifty years old. And even after that, it took nearly two decades for schools to figure out what those rights really meant in practice.

So, here is how the history of special education in the US collides with my life. I was born with severe bilateral hip dysplasia (complete dislocation on one side, and neither acetabulum was formed enough to be usable.)  Between ages 1 and 4 ½, I had 12 reconstructive surgeries, which also included being in multiple body casts for the better part of 3 years, and in a specialized position brace when not in a body cast, just so I’d be able to walk.  These surgeries included having my pelvis broken, reshaped, and restructured multiple times, and because I had no functioning acetabulums, I had what were called “notching procedures” where they actually cut notches into my pelvis to be used to hold the femoral heads (and which, of course, wore out as I grew, and had to be redone multiple times.  These also meant I had no synovial fluid on either side, so walking was incredibly painful as it was bone-on-bone from day one.)  This was back in the 1960s in the US, and these surgeries were considered miraculous at the time.  

I remember as a child, my parents drilled into me that I was NOT handicapped! (That’s the word they used then, not disabled.) Why did they do that? Because handicapped children in the US had no legal right to an education then! I was told if anyone asked me why I walked ‘funny’ I was to tell them that I had a problem with my leg when I was born, the doctors fixed it, but it left me a little lame. (If that wasn’t an understatement of what really happened, I have no idea what would be!)

I didn’t understand until much later why they did this. It was their way of making sure I got to go to school. There were no ‘handicapped’ students at my school (other than me) unless you counted the one little boy who had to wear an eye patch on one side because he had strabismus. Of course, that eye patch was temporary. Most disabilities aren’t. It wasn’t until 1975 that things changed in the US, and handicapped children gained the Federal right to a free, appropriate education.

Later in life, I became a teacher myself, and I’ve watched the pendulum of change in the US, from no education for children with disabilities, to education that was less than ideal (and in some cases, barbaric), to what we have today, a well-intended system that is at its breaking point. 

This is the reason I wrote this article, and the reason I wanted to share it with you, my fellow people with disabilities.  If you’d like to read it, here is the link.  https://janmariet.com/the-good-old-days-but-for-whom/  

If we forget our past, we are doomed to repeat it. 

The Good Old Days — But for Whom?  When Schools Changed: The Forgotten Truth About Inclusion and Exclusion

The Forgotten Truth About Inclusion and Exclusion

1960s class on the front steps to the school, with the teacher and principal standing in the background.  There are no disabled students in this picture. Schools in the 1960s didn't have ramps or any accessibility features.

People love to talk about how much better schools were “back in the day.” They remember the 1950s through the early 1970s as an age of discipline, manners, and respect for teachers. But that nostalgia leaves out the children who weren’t there at all, and the harsh realities for those who didn’t fit the mold.

Who Wasn’t in the Classroom

Before 1975, most public schools set IQ cutoffs for attendance. Many districts refused enrollment to children whose IQs fell below 70, labeling them “uneducable” or simply “trainable.” Those children were often sent to state institutions or “training schools” designed to teach simple, repetitive tasks like folding towels or sorting utensils, not reading, writing, or math. Others stayed home entirely.

Students who were blind, deaf, or physically disabled were typically sent to special residential schools, often far from their families. Parents might see them only on weekends or holidays. And because public buildings were not required to be accessible, even mildly disabled children were shut out of neighborhood schools. There were no ramps, elevators, or adaptive devices. Bathrooms were inaccessible, and classrooms were packed tightly with rows of desks, leaving no space for mobility aids or wheelchairs.

Institutionalization and the Lost Generation

Conditions in many institutions were bleak. Children labeled “mentally retarded” or “behaviorally disturbed” often lived in overcrowded, understaffed facilities. Education was minimal, if it existed at all. Some were restrained, neglected, or warehoused for life. The heartbreaking images later released from places like Willowbrook State School revealed just how far from “the good old days” those years really were. (Read the endnote on the Dark Legacy of Willowbrook for more information on the Willowbrook State School.) 

The Illusion of Order

In regular classrooms, order and conformity were valued above all else. Corporal punishment was common. Children were expected to sit still, memorize, and obey. Those who could not were labeled as defiant or lazy, when in reality many had undiagnosed conditions such as ADHD, autism, or dyslexia.

Gifted children often struggled too. Those who thought creatively or challenged ideas were seen as troublemakers. If they finished their work quickly or questioned teachers, they were accused of showing off. Some were pushed ahead a grade or two based solely on academic performance, even though they were not emotionally ready for that leap. Many of these bright but misunderstood students eventually became alienated and dropped out of school completely.

Grouping and “Tracking”

By the 1960s, many schools used ability grouping, or “tracking.” Students were sorted into high, middle, or low groups based on IQ scores or test performance.

  • The “high” group, usually made up of middle-class white students, thrived under challenging work and high expectations.
  • The “middle” group received average instruction and maintained steady progress.
  • The “low” group was assigned remedial work with minimal expectations. These classes were often led by teachers who were inexperienced, struggling professionally, or approaching retirement and worn down by years of classroom stress. The message to those students was clear: no one expected much.

What was meant to streamline instruction ended up boxing students in instead. Students rarely moved between groups, and those in the lowest tracks often stayed there for their entire schooling. Many of these children had undiagnosed learning disabilities that would not be recognized until years later.

The Struggle Toward Inclusion

When the Education for All Handicapped Children Act (Public Law 94-142) passed in 1975, it promised to change everything. But early implementation was chaotic. Students with widely different needs, physical disabilities, developmental delays, emotional disorders, and learning challenges were lumped together in “special education” rooms at the end of the hall. Teachers had little training and no aides. When behavior or frustration escalated, some schools relied on isolation boxes or padded “quiet rooms,” believing these were therapeutic. They were not. They were contained.

The Evolution and Reality of Special Education Teachers

When special education first appeared in public schools in the 1970s, there was no clear model to follow. Many of the first special education classrooms were staffed by teachers who had general education or psychology backgrounds but no formal training in disabilities. Some came from social work or medical settings, bringing compassion but little classroom experience. Others were simply reassigned from general education because the principal thought they were patient, nurturing, or ready for an easier role near retirement.

As the field developed through the late 1970s and 1980s, universities began creating special education degree programs that focused on behavioral management, individualized instruction, and legal compliance. Special education teachers became trained professionals with specific credentials, expected to write Individualized Education Programs (IEPs), modify instruction, and collaborate with general education teachers.

Today, certification standards are far more rigorous, yet the reality is harder than ever. Special education teachers are pulled in every direction — co-teaching in general education classrooms, running small pull-out groups, attending IEP meetings, documenting progress, and providing accommodations for dozens of students with very different needs. Paperwork alone can consume more than half their work week.

Meanwhile, there is a national shortage of qualified special education teachers. Many schools rely on paraprofessionals (paras) to provide in-class support. These paras are often kind, patient, and dedicated, but few have specialized training in autism, learning disabilities, or emotional and behavioral disorders. In some classrooms, a single para may be responsible for several students at once, all with unique needs.

As a result, many students who are legally entitled to a set number of instructional or support “minutes” under their IEPs never receive them. Teachers are pulled to cover other duties, and the general education teacher is left trying to fill the gap, juggling 20 to 30 other students while also providing accommodations they were never trained to deliver.

Most general education teachers take only one introductory course on special education during college. It is often an inspirational overview about inclusion and empathy, not a hands-on course about how to implement an IEP, collect data, or write modifications that actually work.

To make matters worse, general education teachers and special education teachers almost never have time to plan together. The classroom teacher’s planning period is scheduled during the school day, but during that same time the special education teacher is usually attending IEP meetings, handling crises, or providing pull-out instruction. Without this collaboration, the co-teaching model — which depends on communication and joint planning — falls apart before it even begins.

Today’s Challenge

Now the pendulum has swung in the opposite direction. Many schools are so afraid of lawsuits or compliance violations that they push full inclusion, even when it is not appropriate. Students with severe behavioral, cognitive, or emotional challenges are placed in general education classrooms without the supports they need to succeed. Teachers are expected to differentiate instruction for every student, often without additional help.

The result is that no one gets what they truly need. Struggling students flounder, advanced students wait, and teachers — both general and special education — feel defeated.

Finding the Middle Ground

The history of special education is not a straight path from wrong to right. It is a story of overcorrections and unintended consequences.
We have moved from exclusion to inclusion, but we still have not achieved integration — the balance point where every child has access, support, and belonging.

The “good old days” were not good for everyone. But remembering who was left out helps us see how far we have come, as well as how far we still have to go.


Endnote: The Dark Legacy of Willowbrook

Willowbrook State School, located on Staten Island in New York, opened in 1947 as a state-run institution for children and adults with intellectual disabilities. It was built to hold about 4,000 residents but soon housed more than 6,000. Overcrowding, neglect, and a lack of funding turned it into a warehouse for people society preferred not to see.

Most residents lived in large wards with rows of metal beds, few clothes, and almost no personal space. Many were left unattended for hours, sitting or lying on the floor. Education and therapy were virtually nonexistent. Those who could have lived with family or in the community had no such option, since community-based programs did not yet exist.

In 1972, television reporter Geraldo Rivera exposed the conditions in a shocking investigative report called “Willowbrook: The Last Great Disgrace.” Hidden cameras revealed children rocking on the floor, smeared with filth, and overworked attendants struggling to care for dozens of residents at once. The report horrified viewers and forced the public to confront the reality of institutional “care.”

Even more disturbing, it later came to light that some residents were used in unethical medical experiments during the 1950s and 60s. Researchers intentionally infected children with hepatitis, claiming it was justified because the disease already spread rapidly inside the overcrowded facility.

The public outrage that followed helped fuel the disability rights movement and the deinstitutionalization of the 1970s and 80s. A class-action lawsuit in 1975 led to the closure of Willowbrook and the relocation of residents into smaller community homes.

Willowbrook finally closed in 1987, but its legacy remains a reminder of what can happen when people with disabilities are isolated, undervalued, or forgotten. Its exposure helped pave the way for the Education for All Handicapped Children Act of 1975 and, later, the Americans with Disabilities Act of 1990; laws that moved the country toward inclusion, accountability, and basic human dignity for all.


If you would like to see Geraldo Rivera’s documentary, Willowbrook: The Last Great Disgrace in its entirety, you can visit this non-affiliated link.

(NOTE: TRIGGER WARNING – this video is very disturbing. I remember when it was first shown back in 1972 it was very controversial to show such a disturbing video on television.)

1972. Willowbrook: The Last Great Disgrace, Geraldo Rivera’s original expose – YouTube


If you’d like to know more about what led me to write this story, please take a look at Why I Wrote “The Good Old Days – But For Whom” – Jan Mariet’s A Day in the Life .

We’ve Been Gaslit So Long, We Gaslight Ourselves

Why Chronically Ill People Don’t Always Recognize a Medical Crisis

When the pain first started, I thought, “It’s probably just another flare.”
I waited. I always wait. By the time I realized something was really wrong, I was already doubled over in pain, vomiting bile, and unable to stand upright.

That wasn’t self-neglect. It was conditioning; years of being told it can’t possibly hurt that much or comments that questioned if I might be exaggerating my symptoms.  Chronic illness and the response we typically get from many medical providers teach us to second-guess our own pain.

The Pain Scale Paradox

Even the standard 1–10 pain scale trains us to minimize what we feel. With chronic illness, I’m never really below a five. But if I tell a nurse my pain is a ten, I’m often reminded that “ten is the worst pain imaginable” or “the worst pain you’ve ever felt.”

Well, I’ve had pain that would knock an elephant off its feet or make a quarterback sob in agony, but is this the worst pain I’ve ever felt? Not half! That’s the trap: when your baseline is already high, the scale stops meaning anything. What’s “severe” for most people has become our everyday normal.  For many with chronic illnesses in a medical crisis, on a scale of 1 to 10, we are a 47!

When ‘Wait and See’ Becomes Dangerous

Over time, we start doing to ourselves what others have done to us: minimizing, rationalizing, waiting. With complex medical conditions, where multiple systems overlap or contradict each other, doctors often can’t pinpoint a single cause. The “wait and see” approach becomes the default. “Let’s try one thing and see how you react,” followed by another and another, until months, or even years, pass.

But chronic illness doesn’t work that way. Symptoms may be managed, but they rarely disappear. Some treatments help; others backfire. A few work for a while, then stop. Sometimes, treating one problem triggers another.

When that cycle repeats, both patient and doctor start doubting what they see. Physicians get frustrated with what they can’t fix and patients learn to keep quiet about what still hurts.

How the System Teaches Us to Doubt Ourselves

Many doctors, especially those unfamiliar with chronic pain conditions, grow impatient when the expected “miraculous recovery” doesn’t happen. Some take that frustration out on patients: labeling them “difficult,” limiting care, or implying they’re exaggerating.

We internalize that judgment. We stop calling, stop asking, stop trusting ourselves. We tell ourselves what we’ve heard and experienced so many times, “Maybe it’s not that bad.”  We delay going in until it’s an emergency, or until someone else steps in and demands we seek help.  Why do we wait?  Because if we went to the hospital every time we were in extreme pain, we’d risk being seen as attention-seeking, or worse yet, as “drug-seeking.” Neither is true, but the fear of being dismissed keeps us silent.

Enduring Isn’t the Same as Being Numb

People with chronic illness are not desensitized to pain. We are simply practiced at functioning through it. It’s a survival mechanism, not a lack of sensation.

If an able-bodied person felt what we feel on an average day, they’d call an ambulance. We just keep going because we can’t spend our entire life rolling around on the floor, screaming and crying!  Our mantra often becomes “what cannot be cured must be endured.”  That endurance, though, blurs the line between “normal” and “crisis,” sometimes to the point that things become life-threatening or life-limiting before we realize what has happened.

The Aftermath of Self-Doubt

When things finally spiral, we look back in disbelief:“Why didn’t I call an ambulance? Why didn’t I go in sooner?” “Why didn’t I just that the hard stance and advocate for myself?”

But the real issue isn’t personal failure; it’s a healthcare culture that invalidates suffering until it’s life-threatening. That delay can mean intensive interventions, emergency surgeries, or critical care stays that could have been prevented.

A Call for Empathy and Change

If medical providers and indeed, our own friends and family, instead of labeling us complainers, oversensitive, or fixated, simply reassured us that we were right to seek help, it could change everything. Empathy is so powerful! 

Encourage us to believe ourselves. Remind us that knowing our bodies is a strength, not an obstacle.

Unfortunately, our system rewards speed and limits access to medical providers and treatments. Many specialists can only see patients every six to eight weeks, even during severe flares. That “wait and see” approach leaves people suffering for months, sometimes years, before real help arrives.  No one should have to live that long in pain.

Learning to Trust Ourselves Again

We’ve spent years downplaying our pain to make others comfortable. We’ve spent years being passed from one specialist to another, without resolution or even basic follow-up.

It’s easy enough to say, “You have to be your own advocate and demand help!” but it is harder to do when the system is stacked against you, and you risk having your medical care limited or even denied if you are seen as being too hyper-focused on your own illness or falsely accused of exaggerating your symptoms.  But despite all of that, it’s time we learn to trust our bodies again, before they have to scream to be heard. 

Why Traditional Pain Scales Don’t Work for Chronic Pain Patients

The Problem with Traditional Pain Scales

If you’ve ever sat in a doctor’s office and been asked, “On a scale from one to ten, how bad is your pain?”, you probably sighed before answering.

The standard 1–10 pain scale was designed for acute situations such as broken bones, surgical recovery, or sudden illness. It assumes a baseline of “no pain” and a temporary injury that can be fixed. For people with chronic pain, though, that’s not reality.

When your body hurts every day, the word “pain” stops meaning what it does for other people. Your five might feel like another person’s nine. You may function at a pain level that would send someone else to the emergency room, and still be told you’re exaggerating.

Because traditional scales focus only on intensity, not impact, they fail to show how pain actually changes your ability to think, move, and live.


What Makes a Chronic Pain Severity Scale Different

A Chronic Pain Severity Scale was designed to fill that gap. It doesn’t assume that ‘no pain’ is a chronic pain patient’s ‘normal.’ It recognizes that while many people with chronic illnesses are good at functioning with pain, their baseline is never ‘a zero.’

Instead of numbers without context, each level on this scale includes a clear description tied to function and daily activity.

Traditional Pain ScalesNewer Chronic Pain Severity Scales
Rates pain from 1–10, “worst imaginable pain.”Links each number to how pain affects life—movement, focus, emotion, and independence.
Measures intensity only.Measures intensity + interference + cognition.
Assumes a pain-free baseline.Recognizes that many people always have background pain.
Useful for acute pain (injuries, post-op).More accurate for chronic or neuropathic pain (CFS, fibromyalgia, rheumatoid arthritis, etc.).

For example:

  • A “10” on a Chronic Pain Severity Scale means “I’m in bed and can’t move because of pain.”
  • A “6” means “I think about my pain most of the time and must stop doing certain activities.”
  • A “3” means “My pain bothers me, but I can ignore it most of the time.”

This transforms pain measurement from guesswork into something functional and meaningful.


Why It’s More Accurate for Chronic Pain

  1. It measures the lived experience of pain, not just the sensation.
    Chronic pain isn’t only about how sharp or severe something feels, it’s about how much it limits life. The Chronic Pain Severity Scale captures that impact.
  2. It reduces self-doubt and underreporting.
    Many chronic pain patients minimize their pain after being told, “You can’t really be in that much pain.” A scale that validates the emotional and functional toll helps restore trust between patient and clinician.
  3. It helps clinicians make better decisions.
    Knowing that a patient can’t sleep, cook, or focus because of pain is far more actionable than a vague “7.” It helps guide treatment adjustments and therapy plans.
  4. It tracks progress over time.
    When improvement means doing more with the same pain level, a function-based scale shows real progress even if intensity hasn’t changed.

The Takeaway

Pain isn’t one-dimensional and measuring it shouldn’t be either.
For people with chronic or neuropathic pain, using a Chronic Pain Severity Scale offers language that matches reality; a way to describe not just how much it hurts, but how it affects your ability to live. Until healthcare systems adopt better tools like this one, chronic pain patients will keep having to translate their lives into numbers that don’t fit. The good news is, the conversation is finally changing, and scales that measure chronic pain are starting to take hold in the medical practices that deal with chronic pain pat

So, Have You Tried Not Being Sick? — Your Ultimate Guide to Surviving Ridiculous Medical Comments

When you live with a chronic illness, cancer, or any life-changing medical condition, everyone suddenly believes they have the cure you and your entire medical team somehow overlooked. Experience and actual medical knowledge do not seem to matter. People will offer advice that ranges from overly simplistic to completely unrealistic, yet they are convinced it will solve everything.

It doesn’t matter if they have no medical background at all. It doesn’t matter if their idea is impractical, unscientific, or deeply bizarre. They are absolutely certain it will work, because their cousin’s neighbor’s dog walker once tried something similar and “felt better.”

When you’re faced with these awkward questions, statements, and magical cures, you can try responding gently and with patience. But often the person handing out unsolicited advice only becomes more insistent. This is why humor can become your best tool, especially when logic and politeness have left the building.

Most of my suggestions start with gentle or educational responses for those who genuinely mean well but simply don’t understand. But for the ones who are fully committed to their inaccurate, intrusive, or downright ridiculous assumptions?  You may need to pull out the sassier replies, or even the spicy ones.

So, let’s take a look at some of the seriously awkward things friends, family, coworkers, and complete strangers feel wildly comfortable saying, and the comebacks you can use when your last nerve has officially clocked out.


“I’ve known other people with your illness, and they don’t act this way!”

  • “Medical conditions affect different people in different ways.”
  • “Funny. I did not realize my disability needed your approval to be valid.”
  • “Wow. Please send me the handbook titled How People With My Illness Are Supposed to Act. Mine must have gotten lost in the mail.”

“You’re too young to be this sick!”

  • “Medical conditions can happen at any age.”
  • “Sorry. My body didn’t check my birth certificate before falling apart.”
  • “Trust me. I tried to schedule this for later in life, but my body declined the request.”

“It can’t be that bad!”

  • “I assure you that I’m not making this up or exaggerating.  It is this bad.”
  • “You’re welcome to borrow my symptoms for a day and get back to me.”
  • “Great news. My body is officially cured because you said so.”
  • “You’re right. I just do this for fun.”
  • “Amazing. You assessed my entire medical reality in under ten seconds. Should I call you doctor now?”

“Well, you don’t have to make such a big deal about it!”

  • “I’m not trying to make a big deal of it. It just affects me more than it may seem from the outside.”
  • “I’m doing my best. Sometimes even small things feel big when you’re dealing with chronic illness.”
  • “Oh, sorry. I forgot you were the expert on how much my life impacts me.”
  • “My mistake. Next time I’ll run my suffering through your approval filter.”
  • “Trust me. If I could make it a smaller deal, I would have done that years ago.”

“At least you’re not dead!”

  • “True. But ‘alive’ and ‘living well’ are not the same thing.”
  • “I am grateful to be alive. But that doesn’t erase everything I’m struggling with.”
  • “I hear what you’re trying to say, but it minimizes what chronic illness actually feels like.”
  • “Being alive isn’t the same as thriving. I’m working on the thriving part.”
  • “Well, yes… but survival isn’t exactly my full list of goals.”
  • “I’m glad to be alive. That doesn’t make this easy.”
  • “Sometimes being alive is the hard part.”
  • “Thanks… I’ll add ‘not dead’ to my gratitude journal right between ‘gravity exists’ and ‘the sky is still up there.’”
  • “I know you mean that kindly, but that’s a pretty low bar for quality of life.”
  • “Wow, you’re right — I am alive. Let me go bake a cake in celebration of this very low bar.”
  • “Great, so we’ve established I’m not dead. Now let’s aim for ‘not miserable’ next.”
  • “Well, yes, but if ‘not dead’ is the goalpost, I think we need to raise our standards a bit.”
  • “True. But sometimes it feels like the warranty on my body has definitely expired.”
  • “Well, thank you for that life-affirming insight. I’ll be sure to remember it next time I’m in agony.”    

“Drugs are bad. Drug companies are bad. You shouldn’t need to take medication! You should only use natural healing methods.”

  • “Natural methods can definitely be helpful, but for my condition, I also need the medications my doctors prescribe to stay stable.”
  • “I appreciate that you care, but my illness requires treatment that natural methods alone can’t manage.”
  • “Wonderful. I will let my immune system know it is supposed to heal itself with positive vibes and herbal tea.”
  • “Great plan. I will just go tell my chronic illness to stop being chronic.”

“You must have done something to cause this!”

  • “I know it might seem that way, but many medical conditions happen without anyone causing them.”
  • “I understand why people wonder that, but my doctors have been clear that this isn’t something I caused.”
  • “I try not to blame myself. My condition developed on its own, like many chronic illnesses do.”
  • “It’s natural to look for reasons, but in reality a lot of health issues aren’t caused by anything someone did or didn’t do.”
  • “Yes. I caused it by existing. Wild, I know.”
  • “Right. I woke up one day and thought, ‘You know what would be fun? A lifelong medical condition that makes me miserable!’”
  • “If people only got sick when they ‘caused it,’ hospitals would be empty.”

“You don’t look disabled!”

  • “That’s the tricky part. Not all disabilities show on the outside, but they still impact daily life.”
  • “I understand why you’d think that. Invisible disabilities can be hard to recognize.”
  • “I know it’s not obvious, but I manage symptoms that aren’t visible to others.”
  • “Good thing disability is not a fashion trend.”
  • “Amazing. I did not realize disabilities had a specific look. Is there a catalog I missed?”
  • “Hold on. Let me go put on my official Disabled Uniform so you can feel more comfortable.”
  • “Let me find my official ‘Disability Club Card’ in my wallet so you will be convinced.”
  • “That is the thing about invisible disabilities. You can’t see them… but we still live with them.”
  • “If looking disabled were required, half the population would be disqualified.”
  • “Well, you don’t look like someone who says ridiculous things to strangers… but here we are.”
  • “Shocking, right? Turns out appearances can be deceiving.”

“Autoimmune disorders aren’t real. The doctors made that up so they can get your money.”

  • “I know it can sound confusing, but autoimmune conditions are very real. They’re well-documented in medical research and labs.”
  • “I know people have different beliefs about medicine, but autoimmune disorders are confirmed through bloodwork, biopsies, and imaging, not just opinions.”
  • “Fascinating. I did not realize medical science was supposed to check with you before discovering things.”
  • “Amazing. My immune system attacking my organs must have missed the memo that it is not real.”
  • “Wild. My labs, biopsies, and specialists all disagree, but sure, random stranger, tell me more about your conspiracy theory.”

“Oh, I understand. My grandma had arthritis, too!”

  • “I appreciate you trying to relate. My condition is a bit different and affects more than just my joints.”
  • “Arthritis can be really tough. My condition has some similarities, but it also involves other symptoms that make it more complex.”
  • “I understand what you mean. My illness goes beyond typical arthritis, but I know your grandma must have struggled, too.”
  • “What I have is different from traditional arthritis, but I know both can be painful.”
  • “Ah, yes. The classic Grandma Comparison. Truly the gold standard of medical expertise.”
  • “Your grandma had arthritis. I have a chronic autoimmune disease. That’s where the similarities end.’”
  • “Fantastic. Did she battle systemic inflammation, nerve pain, organ involvement, and fatigue so bad she could not sit upright?  Unless she did, then we are not talking about the same thing.”
  • “If your grandma’s arthritis was anything like this, she deserves a medal. And so do I.”

“I have some arthritis in my knees, but I don’t act like it’s the end of the world!”

  • “That’s great that your symptoms are mild. Mine are more widespread and come with additional complications.”
  • “I’m happy your arthritis isn’t too severe. My condition behaves differently and affects my daily life in bigger ways.”
  • “I hear you. My situation is a bit more complex than typical arthritis, which is why it can feel overwhelming at times.”
  • “Congrats on your knees. Unfortunately, my condition affects a little more than two joints on rainy days.”
  • “That is great for you. My body, however, chose the deluxe autoimmune destruction package.”
  • “If mild knee arthritis were my only issue, I would be doing cartwheels. Well… metaphorically.”
  • “I am thrilled your pain is small enough to brag about. Some of us are fighting battles you cannot see.”

“There are people who have it so much worse than you!”

  • “I know others struggle too, but that doesn’t make my challenges disappear.”
  • “Suffering isn’t a competition. We all have our own battles.”
  • “I can care about others and still acknowledge that this is hard for me personally.”
  • “Other people suffering does not make my pain any less painful.
  • “I did not realize pain was a competition. Do I get a trophy for participating?”
  • “Their suffering is regrettable, but it does not cancel out mine.”

“You should be grateful it isn’t worse!”

  • “I do try to stay grateful. It just doesn’t take away the challenges I’m dealing with.”
  • “I understand what you mean. I can appreciate what I have and still struggle with what’s difficult.”
  • “Gratitude helps, but it doesn’t erase my symptoms or make them easier to manage.”
  • “I am grateful it’s not worse. I’m also honest about what I’m experiencing now.”
  • “Gratitude does not magically cure illness but thank you for the spiritual advice you did not need to give.”
  • “Being grateful it is not worse does not make living with this any easier.”
  • “If gratitude could fix my body, trust me, I would be healed, sparkling, and doing backflips.”
  • “Gratitude does not cancel pain.”

“You’d be just fine if you’d lose some weight and exercise more!”

  • “Staying active is definitely helpful, but my condition is medical and needs more than exercise to manage it.”
  • “I do what activity my body safely allows. Unfortunately, my illness isn’t something that improves just from exercise alone.”
  • “A healthy lifestyle is good for everyone, but my condition is more complex than that. I follow the plan my doctor recommends.”
  • “Weight and exercise aren’t the cause of my illness. It’s a diagnosed medical condition that needs real treatment.”
  • “I move as much as I safely can, but my symptoms still need medical care. Lifestyle changes can help, but they don’t cure this.”
  • “Amazing. My specialists must have missed that during the decade they spent in medical school. Good thing you solved it in one sentence.”
  • “Thank you for the medical advice that ignores my actual medical condition.”
  • “I exercise as much as my body allows. Sadly, it did not fix being chronically ill, but please keep pretending it would.”
  • “My illness is complex. Your explanation is not.”
  • “I appreciate the thought, but my condition cannot be fixed by weight loss or exercise. It is a medical issue, not a lifestyle choice.”
  • “Movement and a healthy weight is good for everyone, but unfortunately it doesn’t cure autoimmune or chronic conditions. I follow my doctor’s guidance for what my body can handle.”
  • “Actually, my illness is not caused by weight. It is a diagnosed medical condition that needs real treatment, not just lifestyle adjustments.”
  • “I do exercise as much as my body safely allows. Unfortunately, my condition is not something that improves just from being more active. Activity can actually make it worse at times.”

“There is always something wrong with you… You always have something to complain about.”

  • “I talk about it because I am living with it every day. I am not complaining. I am trying to cope and be honest about my reality.”
  • “It may seem that way, but that is because my symptoms never really stop. I am doing my best to manage them.”
  • “I know it can sound like a lot, but these issues are ongoing for me. I share them so people understand what I deal with, not because I like complaining.”
  • “I am not trying to burden anyone. My health challenges are constant, and sometimes talking about them is part of how I cope.”
  • “I know it seems like a lot. I wish it were not. This is just the reality of living with a chronic condition.”
  • “Oh, absolutely. I wake up every morning excited to overwhelm you with a full report of my medical misery.”
  • “Yes, it is my favorite hobby. Some people collect stamps. I collect diagnoses.”
  • “You’re right. I do love spending all my energy narrating the thrilling adventures of a body that doesn’t function.”
  • “Of course. I schedule new symptoms just so I have something exciting to share with you.”
  • “Absolutely. My chronic illness exists purely for your entertainment.”
  • “Yes, I enjoy describing my medical issues almost as much as I enjoy having them.”

“You just need to have more faith and God will heal you!”

  • “I appreciate that your faith is important to you. Mine helps me too, but my condition still requires medical treatment.”
  • “Chronic illness is not a measure of anyone’s faith. I am doing my best with both faith and medicine.”
  • “Having faith is important to me, but it does not make my medical condition disappear. I trust my doctors and my beliefs to work together.”
  • “My illness is not caused by a lack of faith.”

“Why do you need a handicapped parking place? Those are for people who really need them.”

  • “I use it because my doctor determined that I qualify for it and need it to be as active as I am able. I would not use the space if I did not genuinely need it.”
  • “The state only issues these placards to people who truly qualify, and I am one of them.”
  • “Handicapped parking is for people who need it. My doctor and the state agreed that I do. That is why I use it.”
  • “I qualify for it medically. Not all disabilities are visible, you know..”
  • “I need it for medical reasons that are not always obvious from the outside.”
  • “I don’t discuss my private medical conditions with people I do not know. I have a valid placard, and that is all anyone needs to know.”
  • “I do not owe anyone personal medical details. I have the placard because I legitimately need it. Have a great day!”
  • “I understand the curiosity, but I do not share my medical information with people I do not know. My doctor and the state have already confirmed my need for a placard.”
  • “My health is private. I have the parking permit for medical reasons that my doctor and the state have approved.”
  • “My doctor and the DMV already handled the part where someone decides whether I need it. That someone was not you.”
  • “You should tell the state they issued my placard incorrectly. I am sure they will put you in charge immediately.”
  • “If invisible disabilities came with neon signs, we would not be having this conversation.”

“Why do you need so many medications?”

  • “Each medication helps manage a different part of my condition. They work together to keep me stable.”
  • “I know it looks like a lot, but each one plays a role in keeping my symptoms under control.”
  • “My condition is complex, so it takes more than one medication to manage it well.”
  • Because my body likes variety. It malfunctions in several exciting ways each day.”
  • “If I could fix everything with one pill, I promise I would.”
  • “My illnesses are overachievers, so my medication list has to keep up.”
  • “Great question. Which part of my medical file would you like me to fax you first?”
  • “If you had my symptoms, you’d ask for a pill organizer the size of a suitcase.”
  • “Let’s just say my immune system likes to keep things interesting.”

“What do you mean you can’t climb the stairs? You’re just being lazy.”

  • “I am not being lazy. My body simply cannot manage stairs safely. That is a medical reality, not a choice.”
  • “My ability to use stairs is a medical issue, not a topic for debate. I know what my body can and cannot do.”
  • “I do not discuss my medical limitations with people I do not know. I avoid stairs because it is unsafe for me, not because of laziness.”
  • “I do not need to prove or justify my physical limitations to anyone. If I could climb stairs safely, I would.”
  • “My limitations are medical, not motivational. I follow what my body and my doctor tell me, not what strangers assume.”
  • “If I were lazy, I’d pick something easier than battling my own body every day.”

“Why are you so negative all the time?”

  • “I am doing my best. Living with chronic illness is hard, and some days are heavier than others.”
  • “I am not trying to be negative. I am just being honest about what my body puts me through.”
  • “It may sound negative to you, but it is simply my reality.”
  • “I talk about my health because I live with it every day. That is not negativity. That is honesty.”
  • “I do not get to take breaks from my health issues, so the topics I talk about reflect the life I live.”
  • “Oh absolutely. I wake up every morning excited to disappoint the positivity police.”
  • “If you experienced my symptoms for a week, you’d understand my tone perfectly.”
  • “I am reacting to real problems. My body is not exactly showering me with inspirational quotes right now.”
  • “You’re confusing negativity with honesty. I do not have the luxury of pretending everything is fine.”

“Why aren’t you cured yet?”

  • “Because my condition is chronic. It does not have a cure, at least not yet.”
  • “I wish it were that simple. My condition is chronic, and management is the goal. There is no cure for it…yet.”
  • “Because chronic illnesses do not magically go away.”
  • “Trust me. If there were a cure, I would have Amazon-primed it to my house yesterday.”
  • “I am still waiting for my body’s warranty department to call me back.”
  • “Apparently, my illness missed the memo about resolving itself quickly.”
  • “I would love a cure. Unfortunately, my condition responds to reality, not wishful thinking.”

“It must be nice to stay home and relax all day.”

  • “I know it might look that way from the outside, but most of my time at home is spent managing symptoms and trying to get through the day.”
  • “I understand why you’d think that, but resting at home is something my body needs, not something I choose for fun.”
  • “I do spend a lot of time at home, but it’s because my health requires it, not because it’s relaxing.”
  • “Yes, nothing says relaxation like pain, fatigue, and a stack of medical appointments.”
  • “If this is relaxing, I would hate to see what you consider stressful.”
  • “Sure is. I especially enjoy the part where my body forgets how to function.”
  • “Yes, I just love hibernating at home and missing out on all the fun!”
  • “It is nice. I’ve had so much time to perfect giving myself injections, and keeping up with all my medications and doctors’ appointments is just the icing on the cake.”
  • “Totally. My body falling apart in the comfort of my own home is the height of luxury.”
  • “Oh, it’s fabulous. I wake up every morning wondering which symptom will cancel my plans today. Very relaxing.”
  • “Yes, I am living the dream. Who needs hobbies and a life when you can lie on the couch all day in pain?”

“Only people in wheelchairs are supposed to use these toilets!”

  • “Accessible bathrooms are for anyone with a disability, not just wheelchair users.”
  • “The sign says ‘accessible,’ not ‘wheelchair only.’ I am using the one that is safest for me.”
  • “Good news. Accessible toilets are for more than one type of disability. Surprising, I know.”
  • “Wow. I had no idea you were the bathroom police. Do you have a badge?”
  • “Fascinating. The sign says ‘accessible,’ not whatever you personally imagine.”
  • “If only my disability were as obvious as your confidence in being wrong.”

“Have you tried meditating?”

  • “Meditation helps me manage stress, but it doesn’t treat the medical parts of my condition.”
  • “I do meditate sometimes. It’s helpful, but it can’t replace actual medical treatment.”
  • “I’ve tried it. It’s good for my mind, but it doesn’t change the physical symptoms.”
  • “Meditation is part of my self-care, but it isn’t a cure for my condition.”
  • “Yes. I meditated so hard my chronic illness packed its bags and left. Oh wait… no it didn’t.”
  • “Absolutely. I close my eyes, focus on breathing deeply, but somehow my immune system still keeps doing whatever it wants.”
  • “Yes, I’ve tried meditating. Unfortunately, my body never got enlightened enough to stop being sick.”
  • “Meditation is great. It just does not happen to cure inflammation, joint destruction, or organ issues.”
  • “Oh, totally. I sit quietly, breathe deeply, and my immune system still acts like a toddler with scissors and a tube of lipstick.”

“Have you tried functional medicine?”

  • “I’ve looked into it, but my condition needs medically proven treatments to stay stable.”
  • “Some people find it helpful, but my illness requires the care plan my specialists recommend.”
  • “I appreciate the suggestion. For my condition, though, functional medicine on its own isn’t enough.”
  • “I’ve explored different approaches. My doctors and I have found that evidence-based treatments work best for me.”
  • Yes, and shockingly, my chronic illness did not vanish after a $300 supplement panel.”
  • “I tried it. My disease was not impressed by celery juice and personality quizzes.”
  • “Amazing idea. Let me swap my specialists for someone who thinks inflammation is caused by my ‘chakra alignment.’”
  • “I looked into it. Turns out my illness needs actual medicine, not a wellness podcast.”
  • “Yes, I tried it. My autoimmune disease said, ‘Cute, but no.’”

“Have you tried yoga?”

  • “Yoga can be helpful for some things, but it doesn’t address the medical parts of my condition.”
  • “I’ve tried yoga before. It helps a little with stress, but it doesn’t change my underlying symptoms.”
  • “I appreciate the suggestion, but my body just can’t safely do all the movements, so I follow what my doctor recommends instead.”
  • “Yes, I did yoga. My joints applauded by dislocating themselves.”
  • “Great idea. Let me fix my autoimmune disease with glorified stretching.”
  • “I love yoga. It helps my stress. It does not, however, rewrite my medical diagnosis.”
  • “Sure. I did a downward dog, but my immune system kept doing a downward spiral.”
  • “Yes, I tried yoga. My chronic illness did not find it nearly as life-changing as Instagram promised.”

“Why don’t you try ivermectin?”

  • “I know people talk about it a lot, but my doctor has explained that it isn’t safe or effective for what I’m dealing with.”
  • “I appreciate the suggestion. My illness requires different medications that are designed for my diagnosis.”
  • “I’m following the treatment plan my medical team has created. Ivermectin isn’t part of what they consider safe or effective for me.”
  • “Sure, I’ll ask my doctor if I should take a horse dewormer for my autoimmune disease. I’m sure he’ll agree.”
  • “Right, because when my immune system malfunctions, obviously the solution is livestock medication.”
  • “Great idea. Let me just trot over to the barn and ask a horse what dosage they recommend.”
  • “Yes, I considered it. My chronic illness politely declined the offer to be dewormed.”
  • “If ivermectin fixed chronic illness, rheumatologists would be out of business, and the Tractor Supply store would be a hospital.”
  • “Amazing. You solved my complex medical condition with a farm supply product.”
  • “No thanks. I prefer medicine meant for humans.”

“You should try intermittent fasting!”

  • “Intermittent fasting can help some people, but it doesn’t address the medical issues behind my condition.”
  • “I appreciate the idea. My illness needs a treatment plan that’s a bit more specific than fasting alone.”
  • “I’ve looked into different approaches, but fasting isn’t something my body can safely handle with this condition.”
  • “Oh, perfect. I will just starve my chronic illness into behaving.”
  • “Great idea. Let me fix my medical condition with a diet trend from a TikTok wellness coach.”
  • “Sure. I’ll just tell my cells to wait until my eating window to malfunction.”

“If you just gave up all sugar, your cancer would go away.”

  • “I know people mean well when they suggest that, but cancer can’t be cured by eliminating sugar. My doctors are managing it with real medical treatment.”
  • “Diet can support my health, but it can’t cure cancer. I’m following the treatment plan my oncology team recommends.”

“I appreciate the suggestion. Unfortunately, cancer is much more complex than diet changes alone.”

  • “Eating well is helpful, but my doctors have explained that cutting sugar isn’t a cure for cancer
  • I’ve looked into many approaches, including dietary ones. Unfortunately, no diet can cure cancer. My doctors are managing it with real medical care.”
  • “If only it worked like that, my oncologist could retire and open a bakery.”
  • “I gave up sugar once. My cancer didn’t notice, but I got very cranky.”
  • “Imagine if curing cancer were as easy as skipping cupcakes. The medical world would be so relieved.”
  • “Amazing. My oncologist spent a decade in medical school when all she needed was a sugar-free cookbook.”
  • “Right, because cancer cells are notoriously afraid of fruit snacks.”

Disability Benefits Myths & Facts

Here’s the Reality of What Insurance & Disability Benefits Cover for Wheelchairs, Ramps, Home Modifications, and Other Medically Necessary Items

There is something that most people do not understand about disability benefits in the US. Nearly every part of daily life becomes more expensive, more complicated, and harder to access. Yet the public continues to believe that disabled people receive everything for free. They imagine motorized wheelchairs arriving at no cost, ramps magically appearing on porches, and bathroom remodels being covered because a person “needs them.” They believe Medicare, Medicaid, or disability benefits pay for vans, adjustable beds, and even pools or hot tubs. None of this is true.

Most people have no idea how limited coverage is for mobility equipment and accessibility needs. There are strict criteria, long waiting periods, and very narrow definitions of what is “medical necessity.”

The gap between what the public believes and what disabled people actually live through is enormous.

Here is the real picture:.

1. Wheelchairs Are NOT Free

Medicare, Medicaid, and private insurance all follow restrictive rules.

Manual wheelchair coverage

Medicare will only cover a basic, “standard” manual wheelchair if the patient cannot walk inside their home and cannot use a cane or walker instead. It must be medically necessary inside the home, not outside. If someone can walk short distances inside (even painfully or with difficulty), Medicare often denies the wheelchair.

Power wheelchair coverage

This is where most of the myths come from.

To qualify for a power wheelchair:

  • You must be unable to use a cane, walker, or manual wheelchair.
  • You must need the chair inside your home, not just in the community.
  • Your home must have hallways and doorways wide enough for safe use.
  • You must be able to operate the chair safely.
  • Your doctor must document everything extremely precisely.

If you can walk a few steps indoors or use a manual chair indoors, Medicare usually denies a power chair. If your mobility problems occur mostly outside of the home, then Medicare denies it automatically, because Medicare only pays for equipment used inside the home.

Specialized chairs (tilt, recline, custom seating)

Insurance often denies these even when medically necessary for pressure relief, spinal deformities, or severe disability. Many patients must pay thousands out of pocket.

2. Insurance Only Replaces Wheelchairs Every 5 Years (Sometimes Longer)

Most insurers, including Medicare, use a 5-year “useful lifetime” rule.

  • If your wheelchair breaks or no longer fits your body, they can still refuse replacement until the 5-year mark.
  • If you lost weight, gained weight, or your condition worsened, they may try to “repair” instead of replacing it.
  • Repairs require approval, documentation, and sometimes months of waiting.

People go without mobility equipment for long periods because of this.

3. Upgrades, Comfort Options, or Safety Features Are Usually NOT Covered

Insurance typically does not cover:

  • Lightweight frames
  • Recline or tilt systems
  • Custom cushions
  • Side guards
  • Anti-tip bars
  • Headrests
  • Battery upgrades
  • Off-road wheels
  • Seat elevation systems

If you want a wheelchair that actually fits your body or your lifestyle, you usually have to pay for it.

4. Ramps, Home Modifications, Bathroom Remodels, and Accessibility Improvements Are NOT Covered by Medicare

This is one of the biggest myths.

Medicare does not pay for:

  • Ramps
  • Stair lifts
  • Widened doorways
  • Roll-in showers
  • Bathroom remodels
  • Kitchen modifications
  • Grab bars
  • Lowered countertops
  • Porch lifts
  • Home elevators

Medicaid may cover some modifications in certain states through waiver programs, but these:

  • Have long waitlists
  • Cover only minimal/basic work
  • Do not cover full remodels
  • Often require the family to pay part of the cost
  • Are not guaranteed
  • Are extremely limited in funding

To even be eligible for Medicaid in most states, a disabled adult must meet extremely strict financial rules. This usually means having no more than $2,000 in countable assets, often called the ‘$2,000 asset limit.’ This includes money in savings, checking, or any other accessible resources.

Living with so few resources forces disabled people on Medicaid to remain far below the poverty line. Most accessibility modifications, adaptive equipment, and home upgrades are not covered, so people must pay out of pocket or simply go without.

5. Adjustable Beds Are NOT Covered

Medicare considers adjustable beds “convenience items.”

Coverage is limited to a VERY basic hospital bed frame in a twin bed size  if you meet strict criteria. Anything more advanced (adjustable bases, memory foam, reclining beds) must be fully self-paid.

6. Wheelchair Vans Are NOT Covered

Insurance does not pay for:

  • Wheelchair-accessible vans
  • Modifications like ramps or lifts
  • Hand controls
  • Transfer seats

These typically cost:

  • $65,000–$90,000 for a new basic “no frills” converted van
  • $20,000–$40,000 to convert an existing van
  • $1,500–$5,000 for hand controls or transfer seats

Most disabled people cannot afford this. That is why wheelchair van fundraising campaigns are so common.

7. No, Insurance Does NOT Pay for Jacuzzis or Swimming Pools

Some people genuinely believe disabled people get:

  • Hot tubs
  • Saunas
  • Swimming pools
  • Jacuzzis
  • Spa equipment

for free.

Insurance does not cover any of these, even when they are medically recommended for pain, muscle spasms, or paralysis. A doctor’s prescription does not change anything.

8. “Disability Will Pay for It” Is a Total Myth

Government disability payments:

  • Are NOT tied to actual needs
  • Do NOT increase because of medical equipment needs
  • Are NOT based on medical costs
  • Average $1,300–$1,500 per month for SSDI, and that is the total amount the disabled person gets to live on – for groceries, rent, utilities, insurance premiums and co-pays — everything!
  • Often barely cover rent

Disability checks do not pay for:

  • Wheelchairs
  • Ramps
  • Home modifications
  • Accessible vehicles
  • Hot tubs
  • Beds
  • Walk-in tubs
  • Medical equipment
  • Caregiving
  • Housecleaning
  • Food delivery
  • Air purifiers
  • Mobility aids
  • Bathroom remodels
  • Adaptive clothing

People truly believe disabled people get all this for free. In reality, disabled people pay thousands out of pocket every year and often go without simply because they can’t afford essential items.

These  Myths Protect the System, Not Disabled People

As long as society believes disabled people are getting free equipment, free home renovations, and free vehicles, there will be no pressure to change the system. These myths allow lawmakers and insurance companies to avoid responsibility while millions of disabled people struggle in silence.

Understanding the truth is the first step. Demanding better is the next.  When our society denies access to mobility, accessibility, and independence we choose to neglect our most vulnerable members.

Disabled people deserve more than myths. They deserve systems that support them, equipment that fits, homes they can live in, and lives where basic accessibility is not a luxury.

Real change begins when we stop believing the myths and start listening to the people who live this reality every day.

Any Life Can Change in an Instant

Poverty and disability often go hand in hand. Most people have no idea how fast a life can collapse.  One accident. One illness. One diagnosis. That is all it takes to go from “everything is fine” to “nothing is secure.”

People assume disability is rare or something that happens to “other people.” But disability is the only minority anyone can join at any time.

All it takes is the wrong day, the wrong fall, the wrong medical crisis, the wrong gene. It can happen to anyone due to no fault of their own. It can happen in a moment and change your life forever. It also changes the lives of your loved ones.

Some of us are born into disability and never get the chance to build a financial cushion or to have financial stability. Others work their entire lives only to have their world and finances overturned in a matter of weeks. No one is immune.

Yet disability does not only cause poverty. For many people, disability creates an entire life lived in a constant state of financial limitation. When you live with a condition from birth, or from childhood, or even from early adulthood, you often never reach the earnings, promotions, or savings that nondisabled people take for granted.

You may start adulthood already limited in what jobs your body can tolerate. You may struggle to attend college, complete training programs, or hold long hours. Treatment schedules and medical crises interrupt careers again and again. Even when you work as hard and as long as you possibly can, your earnings generally stay low and your expenses stay high.

This means poverty is not only a consequence of disability, it is often the lifelong companion of disability. You spend years walking a tightrope without a safety net. You make sacrifices most people never see or understand. You learn to live with trade-offs in every decision: medication or groceries, mobility equipment or rent, a medical appointment or a bill payment.

And still, the systems that are supposed to protect people in crisis rarely work as promised. While the public likes to imagine that safety nets are available, accessible, compassionate, and functional, they are not.

Most assistance programs require people to be at complete financial collapse before they can even apply. You must lose nearly everything: your savings, your job, your independence, before you become “eligible.”

So, while you are trying to figure out what is wrong with your body, navigating months-long waits for specialists, undergoing tests and treatments, learning how to live with a new diagnosis, and managing pain, fatigue, or cognitive symptoms, you also have to become a financial strategist, an advocate, a legal researcher, and a paperwork expert. Many disabled people say: If we were this healthy and capable, we would just go to work. But of course, we are not able to do that. We are trapped in the process. We are too unwell to work, yet somehow expected to be well enough to complete the complicated maze of forms and documentation that might actually get us some help.

Losing your health can instantly wipe out your finances, your contingency plans, and your support network. Lifelong friends drift away. Income disappears, but your bills do not.  If anything, your bills increase with the added strain of increased medical costs, adaptive equipment, treatments, hospitalizations, surgeries, medications, and so forth. 

Meanwhile, you are expected to perform at the level of a trained analyst. You collect documents, prove disability through multiple specialists, attend evaluations, file appeals, and navigate systems that even lawyers struggle to understand. 

This is the reality for millions.

The truth is simple. A society that ignores the needs of disabled people is a society unprepared for its own future. Disability is not a “their” issue. It is an “everyone’s” issue. And sooner or later, it touches every family.

We need robust social supports, not as charity, but an infrastructure that truly provides what people need. Not as handouts, but as recognition that any life can change in an instant.

Getting Disability Isn’t Easy

Getting Disability Isn’t Easy; Living On Disability is Even Harder

Disability benefits are lower than most people believe.
They are harder to get than most people believe.
Fraud is far lower than most people believe.
And the amount of evidence you need just to be considered is far more than most people believe.

What most people never see is the long, exhausting process behind the scenes. The system is extraordinarily complicated. You must have multiple medical reports from several different doctors, all confirming that you are unable to work. Getting these reports costs a great deal of money, and it also takes a tremendous amount of time. Doctors’ appointments can take weeks to months to schedule. Many patients must then wait weeks to months to see specialists. Those specialists order tests and imaging that may require even more waiting. Some doctors will not make a final determination until you complete months of physical or occupational therapy. All of this is required just to build the months or even years of documentation needed for a disability claim.

You will also find that many doctors are hesitant to put in writing that you are “unable to work,” because doing so requires extensive paperwork that they are almost never compensated for. Even after all this, the disability office often overrules the doctor’s diagnosis or opinion. When that happens, the disabled person must appeal the decision, and many must pay out of pocket for additional experts to confirm what their original doctors already stated.

On top of this, you must prove that you have tried every reasonable treatment that might allow you to return to work in any capacity and that those treatments have failed. And you must do all of this while you are not working and have no income at all. Many disabled people spend years filing appeals, attending evaluations, and appearing before Administrative Law Judges. If they are denied, they must start the entire process again. And again.

There is another part almost nobody talks about.
During the first six months you are unable to work, you receive no financial support unless you purchased your own private short-term disability plan before you ever became disabled. If you had any medical history at all, you were probably not eligible to buy one. During this same six-month period, unless you are covered under a spouse’s insurance plan, you must pay for your own health insurance premiums or pay out of pocket for every medical visit, test, and treatment. People who have to rely on Medicaid or a very basic, low-cost plan often cannot access top-tier medical professionals. The wait times to see available providers are much longer, and many specialists simply do not accept those plans. Yet these specialists are the very people you must see in order to document your condition and prove that you are unable to work.

Government disability benefits based on your work history are not a handout. You pay into these programs every single payday of your working life, whether you are part-time or full-time. You cannot even apply unless you have enough work credits, meaning you have been significantly employed for the majority of your life.

But even if you qualify, the income is shockingly low.
Most people who are approved for disability receive about 40 percent of their former earnings, and they still have to pay federal income taxes at the end of the year.

Health insurance creates another huge burden.
If you qualify for disability based on your work history, you must provide and pay for your own health insurance for the first 24 months after you have been declared ‘unable to work’ (in addition to the first 6 months after you had to stop working.)  Only after that do you become eligible for Medicare.

And even when Medicare begins, it is not free. A disabled person must still pay the monthly Medicare Part B premium, deductibles, and co-pays. Most also have to buy a Medicare supplement and a prescription drug plan, because Medicare alone does not cover enough to keep them safely insured.

Typical costs for a disabled person on Medicare, under age 65 (per month):
• Medicare Part B premium: around $185–$200
• Medicare Part D drug plan: often $80–$100 or more
• Medigap (for example, Plan N): commonly $300–$600+ depending on state and health
• Co-pays, deductibles, uncovered medications: $50–$200+

For many disabled people under 65, these are not hypothetical numbers. For example, my own current costs are $94 per month for Part D and $530 per month for a Medigap Plan N policy, in addition to Part B.

This does not even include the expensive co-pays on many medications. Even with a drug plan, some disabled patients require medications that cost more than $250 per month, and that is with coverage. Because you are on Medicare, you are no longer eligible for the low co-pay programs that many pharmaceutical companies offer for high-cost medications. It is far more common than people realize for someone on disability and Medicare to need medications that cost more than their entire monthly disability payment. Many disabled people are forced to go without necessary medications that keep them alive. This leads to more hospitalizations, more medical complications, a worsening of their overall health, and eventually, death.

The government and the media rely on the public not understanding how difficult, expensive, and inaccessible this system really is. When the public believes disability benefits are easy to get or generously funded, it removes pressure to fix the system. It allows lawmakers to avoid accountability while millions of disabled people struggle in silence, financially punished for medical conditions they never chose. Nothing changes because most people simply have no idea how bad the system truly is.

Why We Stay Silent

Why So Many of Us Keep Chronic Pain to Ourselves

Chronic pain is one of the few experiences that can reshape every part of a person’s life. It affects our bodies, routines, identities, moods, and sense of belonging. Yet many of us choose to keep most of that struggle hidden. We grit our teeth, put on a face that looks “fine”, and move through the world as if our bodies are not screaming at us. People often assume we stay quiet because we are private, strong, improving, or simply used to it. The truth is far more complicated.

There are many reasons that people with chronic pain learn to keep their pain to themselves. Some are protective. Others come from long years of being misunderstood or receiving negative reactions when we share what we are going through.

1. The discomfort of others

When we talk about pain, people look worried or awkward. They shift in their seats. They reach for solutions that do not exist. They want to fix something that cannot be fixed, which only increases their discomfort and our guilt. Eventually, we start hiding our truth to protect them. Their discomfort becomes our responsibility, even though it should not be.

2. Friends want to help, but they do not know how

Most people are wired to respond to pain with action. They offer treatments, supplements, diets, or miracle stories from someone they know. These suggestions are well-intentioned, but they are often exhausting. Chronic pain does not respond to quick fixes. It does not disappear because someone “means well”. Many of us stay quiet because we do not have the energy to manage someone else’s panic, worry, or problem-solving when we can barely manage our own lives.

3. Fear of losing people

This fear is real. Many people back away once they realize how complicated our health is. Not because they are unkind, but because they feel helpless or overwhelmed. They do not know what to say, so they say nothing. They do not know how to show support, so they quietly disappear. Silence becomes a way to protect ourselves from being abandoned again.

4. Protecting our social lives

We do not want to be “the sick friend.” We do not want to be the person who makes every outing feel heavy. We do not want to see pity in someone’s eyes. So we hide the limp or swollen fingers, swallow the tears, and pretend we are functioning better than we are. When we stay silent, people seem more comfortable around us. Silence keeps the social doors open.

Silence may protect us, but it comes with its own price.

1. It is not authentic

When we hide our pain, we silence parts of ourselves in order to keep others comfortable. It creates a version of us that is not quite real. Over time, this becomes isolating, and we are left wondering whether people are friends with us or friends with our carefully managed persona.

2. It damages relationships without meaning to

When we act “fine”, our friends believe us. They assume things must not be too bad. So when we end up in a crisis or the hospital, they ask, “Why didn’t you tell me?” They feel blindsided, shut out, and unsure if we trusted them. They do not understand that we were trying to protect them from worry, helplessness, or fear.

3. We carry the weight alone

A deep loneliness grows when your outside world does not match your inside world. Carrying chronic pain in silence feels like dragging a heavy backpack that no one else can see. You are exhausted, but you feel guilty asking for help because everyone assumes you are doing well.

4. We miss the chance to be supported

Not all friends run. Some stay. Some want to know how we really are. Some are capable of compassion instead of panic. Silence keeps us from discovering who those people are.

This is where many of us get stuck. If we talk about our pain, we might lose people. If we hide it, we lose ourselves.

There is no simple solution. Every person with chronic pain learns to walk a tightrope between honesty and self-protection. Some days we share. Some days we stay silent. Some days we search for the impossible balance between the two.

If you are expecting a profound, life-changing ending here, you will be disappointed. We believe people should accept us as we are, listen to our worries and pain, console us without trying to “fix” us, and remain patient and kind at all times. In a perfect world, they would. But humanity is not built that way.

Everyone’s patience and compassion have limits. Friendship is about both giving and receiving, and those of us with chronic illness often feel the weight of being the one who needs more than we can give. The other half of the friendship can feel the strain of giving more than they expected, and indeed, more than they have the desire or energy to give.

How many of us enjoy hearing the same struggles repeated day after day? How many of us like adjusting every plan so that one person can be included? How many of us stay patient when a friend cancels at the last minute, even when the reason is valid? All of us have limits. Once those limits are reached, we pull back.

So why do we expect anything different from the people we care about? ‘s not realistic to believe that friendship remains strong when one person is always doing the heavy lifting while the other cannot. Relationships strain under that imbalance. It does not mean anyone is unkind. It simply means everyone has a threshold, including the people we hope will stay by our side forever.

So, we learn to walk the line between expressing our pain and protecting the friendships we value. We speak when we can. We stay silent when we must. We do our best to find a way to belong without losing ourselves.

And in the end, maybe that is the real truth of living with chronic pain; there is no perfect answer. There is only doing the best we can with the body we have, holding on to the people who choose to stay, and allowing ourselves to be human in a life that is far more complicated than most people will ever understand.

My Disabilities Do Stop Me

When I was a young adult, I used to say things like, “Yes, I have a disability, but I never let my disability stop me.” I worked twice as hard to make sure it never did. I pushed myself through pain and exhaustion, determined to prove that I could keep up. I smiled through agony and hid how much it cost me, just so I could say I didn’t “let it stop me.”

Later, after my 19th reconstructive surgery just to keep walking, I softened my words. I’d say, “I have a disability, and while I can’t always do things the way everyone else does, I’ll still get it done.” But those “other ways” often meant forcing my body to do things it wasn’t capable of anymore, causing new injuries, flare-ups, and setbacks I pretended didn’t exist.

Now, decades later, after two life-altering battles with cancer, the loss of several internal organs, malnutrition from a chronic GI condition, and spinal damage that leaves me physically fragile, I’ve stopped pretending. I can no longer claim that I can do everything a more able-bodied person can. My medical conditions have completely taken over my life.

My disabilities do stop me. They control when I can shower, walk, eat, talk, and move. They decide if I can work, socialize, or even get out of bed. They’ve taken over parts of my life I once thought I could always control. They have humbled me in ways I never would have imagined.

And you know what? It isn’t giving up.  It isn’t a lack of character.  It isn’t a lack of faith, or courage, or stick-with-it-ness.  It’s honesty, pure and simple.

Telling someone “Don’t let your disability stop you!” isn’t kind. It isn’t encouraging. It’s pressure disguised as support. It erases the truth that some disabilities do stop us. It suggests that the only valuable disabled person is one who keeps producing, achieving, and pretending not to be disabled.

My disabilities do stop me. They always will. They’ve reshaped my life, but they haven’t erased it. They don’t stop me from being human, from loving deeply, from creating meaning in the ways I still can. They haven’t stopped me from finding joy in small places, showing courage, or maintaining resilience through incredibly difficult circumstances.

As my life and abilities continue to change, I keep learning how to adapt. It isn’t easy, and it often brings frustration, confusion, and moments of utter helplessness. But each time I rebuild, I’m reminded that strength isn’t about defying my limits, it’s about living honestly within them.

True resilience isn’t pretending nothing can stop you. It’s finding purpose, grace, and self-worth even when something does.

Medical Trauma is a Real Thing

Medical trauma is more than just feeling nervous about doctor visits. It’s the kind of fear that settles deep in your body after being hurt, ignored, or dismissed by the very people you were supposed to trust. It’s sitting in the waiting room with your stomach in knots, remembering the times you were told your pain was “just stress,” or that your exhaustion was “just anxiety.” It’s hearing that everything would be fine if you lost a little weight, slept more, or just tried harder. And then being sent home with no real help for the symptoms that are still controlling your life.

If you are a woman, that fear often runs even deeper. It can come from having reproductive procedures done without any anesthesia or pain relief, like an IUD placement, an endometrial biopsy, a colposcopy, a cervical cauterization, or even certain childbirth interventions. You are told it will be quick, maybe a little uncomfortable, and then you are left gasping in pain, feeling betrayed and humiliated for reacting honestly.

Medical trauma teaches you that seeking help can sometimes make things worse. Your body remembers every time you were dismissed, and that memory shows up as anxiety, nausea, or panic every time you need to go back. It’s real. It’s painful. And it changes how you see yourself, your body, and the entire medical system.

You are not weak for feeling afraid. You are not dramatic for hesitating to make another appointment. What happened to you mattered, and it left an imprint. Healing from medical trauma takes time, safety, and people who truly listen. You deserve care that honors your pain instead of dismissing it, and you deserve to feel safe in your own body again.

If this resonates with you, you’re not alone. Many of us carry this quiet fear, and talking about it is the first step toward reclaiming our trust and our voice. If you can relate to this article, please leave a comment below.

When Accessibility is Treated Like an Option

Ableism runs so deep in our culture that many people don’t even notice it. We’re taught to believe that with enough grit and determination, anyone can “overcome” anything, as if disability is simply a matter of effort or attitude.

But that belief is dehumanizing.  It assumes that disabled people fail because they didn’t try hard enough. It ignores the truth that most disabilities are dynamic (they change over time) and invisible (they aren’t always seen). it erases the fact that the world itself is built to exclude us, often by people who do not even realize they are doing it.

It often seems that our buildings, businesses, and public spaces are designed around the idea that accessibility is optional, a feature that can be added later if someone happens to complain. Call a restaurant, museum, or mom-and-pop shop and ask if it is accessible, and you might hear, “Well, once you get inside, it is.” But if you cannot get inside, it is not accessible. Period.

Walk into a restaurant and look for the accessible restroom, if you can even reach it. Too often, the hallway leading to it is packed with high chairs, extra tables, and boxes. When you mention it, someone says, “Oh, we could move those things if you need to get by,” not realizing that they are part of the problem. Accessibility that requires asking for help is not accessibility; it is dependence disguised as kindness.

The same thing happens in stores. Dressing rooms marked as accessible are often used as storage closets, piled high with merchandise or missing the bench or chair that makes them usable. It is treated as harmless, an afterthought, because people assume no one really needs it. But for someone who does, it sends a clear message: you do not matter enough to plan for.

And then there is the language. When a disabled person simply lives their life, goes to work, raises a child, cares for a loved one, or shops for groceries, they are often called “inspirational.” But that is not really the complement it seems to be. It turns a real, complex person into a symbol, a feel-good story for others. It celebrates the idea of “overcoming a devastating disability” instead of questioning why the world is built to make disabled lives harder in the first place.

Accessibility is not about convenience. It is about dignity, equality, and respect. A ramp, a clear hallway, a working door button, an open dressing room — these are not luxuries. They are the difference between being included and being shut out.

If we want a truly inclusive world, we have to stop congratulating people for “trying harder” and start demanding systems, spaces, and attitudes that stop making it harder in the first place.

Skirts, Sneakers, & Sports

How Things Have Changed for Girls in the Past 50 Years

Sometimes, I look back and realize just how many quiet revolutions I’ve lived through. They weren’t the kind that make headlines, but the kind that change how ordinary people live, dress, and think. When I think back to how things were 50-60 years ago for girls in school, I am surprised by how many things we took for granted as just being ‘the way things were’ and never even realized we were a part of a cultural revolution.

Before the mid-1970s, Girls Were Only Allowed to Wear Dresses or Skirts.
A Typical Late 1960s Classroom. Girls had to wear dresses or a skirt and blouse. No one could wear gym shoes except during gym class. Boys had to wear a belt.

I remember in the 1960s when girls could only wear skirts or dresses to school. Around 1970, girls were finally allowed to wear pants, but only if they were part of a “pantsuit.” In the mid-1970s, girls could finally wear jeans (or “dungarees,” as the teachers called them, but there were strict rules. They couldn’t be faded, torn, patched, or rolled at the cuffs. They also had to be in a “girls’ style,” meaning they were cut more like dress pants made from denim. “Girls’ Style Jeans” really looked more like dress pants made out of denim than what we now call ‘jeans.’

Girls’ Pantsuits Were the Only Pants We Could Wear to School and That Didn’t Happen Until 1970

Even gym class was different for girls. It wasn’t called PE back then. Boys’ and girls’ gym classes were separate until the late 1970s. Girls had to wear one-piece gym suits that zipped up and had darts in the front so we would look “ladylike,” while boys wore shorts and T-shirts. Even our gym shoes were regulated. We had to wear “girls’ gym shoes,” thin white or blue canvas sneakers with almost no support. When schools finally allowed us to wear the sturdier “boys’ gym shoes,” those delicate versions disappeared almost overnight.

The Typical Girl’s Gym Suit in the 1960s & 1970s
Girl’s Gym Shoes
Boys’ Gym Shoes (Girls Were Finally Allowed to Wear These in 1975. I had this exact pair.

About the only time junior high and high school age students were in gym together was for the infamous square-dancing classes we had to take. We had our first square-dancing class in fourth grade, and eighth grade was the last year we were forced to do this. Sometimes, there were more girls than boys, so girls would have to partner with another girl. It was a strict, but unwritten rule, that two girls could dance together, but two boys never could.

Until I was in ninth grade, we had separate gyms for boys and girls. I never saw the boys’ gym until ninth grade, when classes became co-ed. Even then, the difference was obvious. The boys’ gym was large, with a full basketball court, polished hardwood floors, bold court lines, and bleachers on both sides. The girls’ gym was only a half-court with a composite floor and faint paint lines. The basketball nets were lower and usually cranked up out of the way. The ceilings were so low that when we practiced layups, the ball sometimes got stuck in the beams.

Girls Learning Gymnastics in Their Gym Suits in the Girls’ Gym and Even the Gym Teacher Wore a Skirt
Girls’ Gym Classes Focused on Grace and Beauty

Half the Court, Half the Freedom

Even what we learned in gym class was different. Girls had to play “girls’ basketball,” a version created to make the game “easier,” since it was believed that full-court basketball was too demanding for girls. This old version, used in many schools from the early 1900s through the 1970s, was called “six-on-six” or “girls’ rules basketball.”

When I first played basketball in school, it wasn’t the same game the boys played. We had six players instead of five—three forwards who could shoot and three guards who stayed on the defensive side. We played on a half-court divided by a center line that only the players handling the ball could cross . We could dribble only three times before passing, and physical contact was almost completely forbidden. We were even allowed, and encouraged, to shoot baskets “granny-style,” holding the ball between our knees and tossing it underhand toward the hoop. The pace was slow, the scores were low, and the message was clear: girls were expected to stay in their place, both on the court and off it.

Girls Playing Girls’ Rules Basketball in Their Gym Suits

Even our uniforms told the story. Those stiff, unflattering one-piece gym suits were designed to look proper rather than practical. Looking back, I can see how those “rules” mirrored the larger social expectations for girls at the time. Our sports and our clothing were built around the belief that girls were fragile and needed protection from anything too vigorous. It seems absurd now, but it shaped generations of girls’ experiences in school.

The Art of Gym Class: Grace Over Grit

This is What Boys’ Gym Class Looked Like — Daring and Physical
This is What Girl’s Gym Class Looked Like — Graceful Teamwork

Back then, even gym class reflected what adults thought girls should be. We didn’t play basketball often. While the boys learned wrestling, indoor hockey, and rope climbing, we were guided toward something called “educational gymnastics poses.” The teacher would hold up posters showing silhouettes of girls forming shapes—arches, pyramids, balances, or mirror poses—and we had to recreate them in pairs or trios. Mostly, this was geared for getting girls ready for the major ‘girl sport’ of the era, which was cheerleading. It wasn’t about strength or competition; it was about grace, rhythm, and teamwork. Sometimes we moved to music, sometimes in silence, always carefully, neatly, and “ladylike.”

At the time, it seemed normal. Only later did I realize how those lessons shaped what we thought we could do. The boys built muscle and confidence in their own strength. We learned to move beautifully within limits someone else had drawn for us, always reminded to be graceful above all else.

Running Against Limits

Track and field for girls in the 1960s was another story of boundaries. We weren’t encouraged to test our limits; we were told we had them. The longest race most schools allowed was the 400 meters, and even that was considered daring. Anything longer was thought to be “too hard on the female body.” There were no pole vaults, no steeplechase, and certainly no marathon dreams for girls. Our shoes were thin canvas, our uniforms were culottes or those same one-piece gym suits, and our races were short and polite. While the boys trained to push themselves, we were trained to stay within the lines drawn for our “protection.

Separate and Unequal: Access, Uniforms, and Coaching

Looking back, it’s impossible to miss how uneven school sports were. The boys had full teams for every season—varsity, junior varsity, and sometimes even freshman squads. They had real coaches, matching numbered uniforms, and the best gym times and equipment. Their sports were loud, physical, and proudly competitive.

For the girls, it was another story. Cheerleading was the big opportunity, with its polished uniforms, pom-poms, and choreographed enthusiasm, but it mostly existed to cheer for the boys. When girls’ sports teams did form, they struggled to find enough players and often didn’t have proper uniforms. We wore our gym suits or athletic shorts, and practice usually meant borrowing a corner of the boys’ gym after they finished.

Other popular sports activities for girls were baton twirling, tennis, badminton, and volleyball.

Coaches for girls were almost always volunteers. The boys’ coaches were paid stipends for their work. Bus transportation was provided for the boys’ teams; the girls’ teams carpooled to events. The results of the boys’ games appeared in the local sports section of the newspaper. The girls’ teams were mentioned only if they won a regional event or as a novelty story about “the girls’ efforts.”

This Was the Girls’ High School Volleyball Team. As You Can See, Not Many Girls Participated

At the time, it all felt normal. Only later did I realize that what we lacked wasn’t talent or interest—it was opportunity. The difference between what boys were given and what girls were offered wasn’t about ability. It was about expectations.

Today’s girls can hardly imagine those days. Just as we once struggled to picture what our great-grandmothers endured as suffragists fighting for the right to vote, the young women of today can’t fully imagine a time when girls were expected to be “ladylike” at all times, even in gym class. I’m grateful they don’t have to. The world I grew up in is now history, and those quiet revolutions such as pants in classrooms, sneakers with support, and girls running their own races, were steps toward something better.

We never realized we were part of a cultural revolution.  It seemed to happen so gradually, but it didn’t happen without effort and pushing the limits of what was acceptable during that time frame.

Too Old to Hire, Too Young to Retire

As companies close, downsize, or replace workers with automation and AI, educated and experienced individuals over 50 often find themselves shut out of the job market. Some employers lay off older, higher-paid workers to replace them with less qualified employees at much lower wages. Others quietly push them out to avoid pension obligations, rising healthcare costs, or potential increases in workers’ compensation claims. Older employees are more prone to injuries simply because aging bodies, slower reaction times, and occasional lapses in memory or focus can make physical or even routine tasks more hazardous.

Many companies also prefer younger hires because they believe older workers lack up-to-date skills. Imagine being 65 and required to work until 70, yet unable to find any job that provides a living wage. The reluctance to hire anyone over 50 is widespread, and those who do find work are often forced into lower-paying jobs. This not only affects their current income but also reduces their future pension or retirement benefits, since those are often based on recent earnings.

People in physically demanding jobs face an even greater challenge. Construction workers, nurses, warehouse employees, janitors, truck drivers, landscapers, and factory workers rely on their bodies for their livelihood. By their mid-60s, many of these workers are already dealing with chronic pain, joint deterioration, and limited mobility after decades of strain. It is not realistic to expect them to safely lift, bend, climb, or stand for hours a day until they reach 70. For them, “working longer” is not a choice; it is an impossibility.

Health concerns also play a major role. Employers worry that older workers might have more medical issues or need additional time off. By their late sixties, many people begin to face the normal physical and cognitive changes that come with age. Telling them to “retrain” for an entirely new field sounds simple in theory, but unrealistic in practice.

Research shows that about one-third of U.S. adults aged 65 and older already experience mild cognitive impairment or dementia. In the early stages, many do not even realize they have a problem. If these individuals cannot access Social Security or pension benefits until age 70, how are they supposed to function in demanding jobs that require constant focus, reasoning, and memory?

Even the current retirement age of 67 is pushing the limits of what many older adults can realistically manage. Raising it further would not extend productivity; it would extend hardship. For millions of aging Americans, it would mean years of struggle, financial insecurity, and exhaustion instead of the dignity and stability they worked their whole lives to earn.

What are your thoughts on this? Should the retirement age really be raised to 70? Is 67 reasonable, or should it go back to 65 or even 63? Share your perspective in the comments and join the conversation.

Nobody’s First Choice (Poetry)

Nobody’s first choice.
Not anyone’s favorite person.
People may say I matter, but those are just words
and occasional forays.
There’s always someone else they’d pick first.

It’s a quiet kind of pain, knowing that no matter how much love I give,
I’m the one left waiting. Wanting. Hoping.
Waiting for the truth I already know
will finally be spoken,
pretending it doesn’t matter, while my silence
screams what my words cannot.

I’ve learned that it’s better not to try,
because trying means failing again.
It aches to know,
no one fears losing me.

If I vanished, it would be a while before anyone noticed.
Maybe a passing thought months later,
“I wonder what ever happened to her…”
Or maybe not even that.

I keep hoping someone might choose me first,
but after a lifetime of waiting, and trying, and aching,
I know better.

I’ve always been the vague backup plan,
the easy choice.
When I refuse to settle for that role,
love disappears entirely,
if it was ever truly there at all.
Was it ever really there?

Deep down, I know the answer.
Each morning, I wake because the alarm rings,
not because of hope or anticipation.
To hope feels dangerous now.
If I do nothing, I ache with loneliness;
if I reach out, I ache with rejection.
Either way, I bleed.

How can I have lived so long
and never been chosen?
Never asked out?
Never danced?
Never heard someone say,
“I just needed to hear your voice,”
and they were talking to me?

Who lives like this, knowing
they weren’t even second-best.

I’m kind.
Helpful. Compassionate. Strong,
resilient and resourceful.
I find joy in small places.
I live my convictions. I spend my life trying
to make a difference,
quietly, relentlessly,
and still, I am never what anyone wants.

I’m nobody’s first choice:
I’m not even anyone’s act of desperation.

I’m just the space people pass through
on their way to someone else.

by Jan Mariet 11/1/2025