Primary healthcare in the US is not failing because doctors suddenly stopped caring.
It is failing because independent medical practices are being squeezed from every direction: crushing administrative costs, endless insurance paperwork and claim denials, rising malpractice premiums, expensive electronic record systems, and the financial pressure of trying to stay competitive in a corporate healthcare system.
More and more practices are being absorbed by large hospital systems, private equity groups, and corporate healthcare networks that prioritize volume and profitability over time and continuity of care.
Meanwhile, patients with complex chronic illnesses are expected to fit their entire medical reality into a 15-minute appointment. No doctor, no matter how dedicated, can provide thoughtful, comprehensive care while being forced to rush through packed schedules booked weeks or months out in advance.
Even the most skilled and compassionate physician cannot provide excellent care while being expected to move patients through like an assembly line, with appointment schedules booked months in advance and barely enough time to address one problem before moving on to the next patient.
People with Psoriatic Arthritis (PsA) often wake up so stiff that they are barely able to move. Some people require assistance just to get out of bed in the morning. It is not “arthritis” in the way most people think of arthritis, such as the wear-and-tear arthritis many older adults develop with age. A more accurate medical description would be an autoimmune inflammatory spondyloarthropathy rather than simply “arthritis.” That wording helps people understand that it is a systemic inflammatory disease, not just age-related joint wear and tear.
Since the word “arthritis” can be misleading, many doctors and organizations now use the broader term “Psoriatic Disease.” And just in case you are wondering, it is possible to have Psoriatic Disease without having obvious or active psoriasis at the time. For some people, visible psoriasis appears later in the course of the disease, while for others it may only become active or noticeable during certain periods of their lives.
Most doctors and researchers believe Psoriatic Arthritis and Psoriatic Disease are caused by a combination of genetics, immune system dysfunction, and environmental triggers. In simple terms, the immune system becomes overactive and mistakenly attacks the body’s own tissues, especially the joints, tendons, spine, skin, and the areas where tendons attach to bone.
There is also a strong genetic component. Many people with PsA have family members with psoriasis, rheumatoid arthritis, autoimmune diseases, or other inflammatory conditions. Certain genes, especially HLA-B27 in some patients, are associated with more spinal involvement and inflammatory disease.
There are also triggers that may “switch on” the disease in someone who is genetically predisposed. These can include:
• Severe stress or trauma • Infections, especially strep infections • Illnesses • Physical injury • Hormonal changes such as puberty, pregnancy, perimenopause, or menopause • Sometimes surgery or major illness
Psoriatic Disease is not caused by aging, “wear and tear,” laziness, lack of exercise, poor diet, or simply “getting older,” even though many people still misunderstand it that way. While there are medications that help many people, some can come with serious long-term side effects for certain patients, including increased infection risk, kidney issues, gastrointestinal problems, fatigue, or cognitive side effects often described as “brain fog.”
Many people with Psoriatic Arthritis put off trying medical treatments because of concerns about side effects and because they fear the medications will completely destroy their immune system and leave them vulnerable to every illness around them. That is not exactly how these medications work.
With PsA, the immune system is overactive and mistakenly attacks the body’s own tissues. Many of the medications used to treat PsA are designed to calm parts of that overactive immune response and bring it closer to normal levels.
Yes, some of these medications can increase the risk of certain infections, and doctors do monitor patients carefully for things like tuberculosis and other opportunistic infections. However, taking these medications does not mean someone will automatically catch every illness they are exposed to or need to live in complete isolation out of fear of getting sick.
In addition to NSAIDS, DMARDs, and biologics, the thing that helps the most is gentle movement, even though movement can be extremely painful at first. It does not have to mean walking a mile or doing intense exercise. Simple walking, stretching gently, and moving around the house can help as much as anything else.
Doctors often use morning stiffness as one way to gauge how active PsA is. If stiffness improves within about 20 minutes, it is often considered milder disease activity. Stiffness lasting around 45 minutes may suggest moderate disease activity. Stiffness lasting longer than 45 minutes can point to uncontrolled disease or a significant flare. The key is to keep moving, even when we are stiff, exhausted, and in pain.
We often wake up exhausted before the day even begins. Simple tasks like showering, getting dressed, brushing our teeth, holding a phone, brushing our hair, typing on a computer, opening jars, or even walking can become painful during flares. Even so, there is no choice except to keep moving when we first wake up and then rest when needed throughout the day.
The stiffness and pain also become worse if we stay in one position for too long. Things like long car trips, air travel, standing in line, sitting at a desk all day, or even staying in bed while sick with something like the flu or COVID can significantly increase stiffness and pain. Getting too cold or sitting directly in the path of a fan or air conditioner can also make the stiffness and pain worse.
We learn to keep smiling and showing up for others, even when we are quietly struggling with pain and fatigue, because living in complete isolation can sometimes feel even worse than the pain and fatigue. After a while, friends and family sometimes begin to expect this from us, even during severe flares.
But there are also times when we simply cannot do it. We cannot shower. We cannot cook. We cannot open jars or cans. Sometimes we cannot even walk safely because the stiffness, weakness, pain, or fatigue make us too likely to stumble and seriously injure ourselves.
Why do we push through the stiffness and exhaustion? Why do we say we are fine when we are anything but fine? Because what kind of life would it be if all we ever did was talk about pain? We still want friendships, relationships, laughter, normal conversations, hobbies, and experiences. We still want to participate in life.
But there is a downside to constantly pushing through and pretending we are coping better than we really are. The people around us often begin to believe that things are not all that bad, or that we are handling everything well. Many times, that is the furthest thing from the truth.
We also learn very quickly that talking too openly about pain, exhaustion, limitations, or fear often makes other people uncomfortable. Sometimes people respond with denial because it is difficult to accept that someone they love is truly struggling. Other times, people quietly pull away because it hurts to realize there is very little they can do to fix it.
One of the hardest parts of living with Psoriatic Arthritis is that many people simply cannot imagine being this sick, being in this much pain, or living with this many limitations for years or even decades. They struggle to understand how we can manage certain things on one day, but during a flare, find those very same tasks nearly impossible the next day.
Because of that, people sometimes assume we are exaggerating, being inconsistent, not trying hard enough, or somehow causing our own problems. Instead of responding with empathy and support, some people become frustrated, angry, dismissive, or even hostile. In some cases, they begin blaming the person with PsA for the illness itself or for the limitations the disease causes.
What many people do not understand is that Psoriatic Disease is unpredictable. Symptoms fluctuate and flares happen. A person may seem relatively functional one day and be almost unable to move the next. That does not mean the illness is not real. It means the disease itself is unpredictable and relentlessly exhausting.
Over time, many of us learn to stay quiet. We learn to smile, to change the subject, and to say, “I’m fine,” even when we are in pain, exhausted beyond words, barely functioning, or desperately wishing someone understood that we are not doing nearly as well as we appear to be.
Accessibility is often discussed as something external: ramps, elevators, automatic doors, accessible parking spaces, wider aisles, grab bars, and seating areas. Those things matter deeply, and many people cannot participate in daily life without them. But there is another side of accessibility that people rarely talk about.
For disabled people, accessibility is also deeply personal. It is the lifelong process of learning how to exist within a body that does not move through the world easily.
Long before many of us ever ask for accommodations from society, we’ve already spent years creating accommodations within our own lives. We learn how to lower ourselves onto a chair in a way that won’t cause a fall. We choose higher beds because getting up from a low one may not be physically possible. We memorize where walls, counters, and furniture are located so we can steady ourselves when balance fails us. We learn how to keep “wobbling forward” until we reach something solid because trying to recover our balance too quickly may make us fall harder.
We discover ways to brace our bodies when our muscles become fatigued. We learn how to lean against walls so we can stand and talk a little longer. We figure out which shoes make walking slightly safer, which routes have fewer stairs, which stores have carts we can hold onto, which outings will require too much standing, and how much energy a single task will cost us before we even attempt it.
Over time, many of these adaptations become so automatic that we stop recognizing them as accommodations at all. They simply become “the way we do things.”
For years, I believed walking was naturally painful for everyone because pain had always been part of walking for me. I thought everyone hurt after standing for a few minutes or walking short distances. I thought exhaustion meant I was lazy or simply not trying hard enough, when in reality my body was working far harder than most people’s bodies just to remain upright and moving.
I think that’s part of the reason I pushed myself so hard for so many years. Everyone else seemed to manage, so deep inside, I saw my pain and exhaustion as personal weakness instead of recognizing them for what they actually were.
People often think of assistive devices as things like canes, crutches, braces, orthopedic shoes, rollators, wheelchairs, or mobility scooters. Those things absolutely matter, and many people depend on them. But long before many disabled people begin using visible assistive devices, we’ve often already spent years developing complicated ways of moving, balancing, standing, sitting, pacing ourselves, and pushing through.
We learn how to shift our weight to compensate for weakness. We memorize which movements are safer and which ones may cause pain, instability, or falls. We use walls, furniture, shopping carts, railings, momentum, posture, and body positioning to help us function in spaces that were never designed with our bodies in mind.
People also often assume that one assistive device, one accommodation, or a handful of accessibility features somehow “solves” a disability. In reality, many disabilities are dynamic, meaning they can change from day to day, hour to hour, or situation to situation. Others are progressive, meaning they worsen over time. Many people live with both.
That means our adaptation strategies constantly have to evolve as well.
What worked five years ago may no longer work today. What helps in one environment may fail in another. A person may walk independently one day and need significant support the next because of fatigue, inflammation, weakness, balance problems, neurological symptoms, pain, or environmental barriers.
These changes affect far more than mobility. They affect our ability to work, enjoy leisure activities, attend concerts, weddings, restaurants, community events, craft shows, picnics, and participate in the kinds of social interactions many people take for granted.
Something as simple as standing in line, walking across a parking lot, moving through crowds, navigating uneven ground, climbing stairs, finding seating with enough support, or locating a restroom we can safely use can completely change whether an event is accessible at all. Even the layout of a room, the distance between tables, the availability of places to rest, or how far away parking is located may determine whether participation is physically possible.
Many people think accessibility is only about whether someone can technically enter a space. But accessibility also includes whether a person can safely move through it, remain there without exhausting themselves beyond recovery, and participate in a meaningful way without their body paying a severe price afterward.
One thing many people don’t realize is how much mental calculation disabled people often do before deciding whether we can participate in something that others may view as simple or casual.
For example, can we attend the company holiday party?
Most people might only think about what they’re going to wear or whether the food will be good. A disabled person may have to think through dozens of other factors before even deciding whether attending is physically possible.
Are there stairs to enter the home or venue? Is there a railing? How far is the parking area from the entrance? Is the ground level stable, or uneven and dangerous to navigate? Will there be places to sit and rest? Are the chairs supportive enough to safely get in and out of? Are the sofas so low and soft that once we sit down, we may not be able to get back up without assistance?
If everyone is expected to bring a dish to share, how are we supposed to carry it while also using crutches, a cane, or a rollator? Is our balance stable enough to safely carry something without falling? Will there even be a safe place to set it down while trying to get through the front door?
Will the rooms be crowded? Can we safely move through those crowds with mobility equipment? Will people bump into us, step in front of us, or block pathways without realizing it? If people are drinking and become a little uninhibited, will they be more likely to knock a cane out of our hands or trip over our crutches?
Even something as simple as a buffet or potluck can become complicated. We may need someone to carry a plate for us, but we still have to see what food is available, determine whether there is anything we can safely eat, and navigate crowded spaces in order to do so.
Then there are the questions many people never think about at all. Is the restroom accessible? Is there enough room to maneuver mobility equipment? Are there grab bars? Is it located far away? Will we have to navigate stairs, narrow hallways, or dense crowds to reach it?
Even leaving can become complicated. Someone may need to help us stand up from low furniture, steady us while we navigate steps, carry our belongings, or help us safely reach a vehicle parked in an unsafe or inaccessible location. Street parking alone can create a long list of safety concerns.
What makes all of this even harder is the social pressure surrounding participation. If we ask questions about accessibility ahead of time, will our boss or coworkers think we’re “high maintenance”? Will they assume we think we deserve special treatment? If we decline invitations because the environment isn’t accessible, will we be viewed as antisocial, negative, difficult, or “not a team player”? If some coworkers understand accessibility concerns while others do not, will it create tension or resentment within the group?
Many disabled people constantly weigh whether to advocate for accessibility or simply “go along” in order to avoid conflict, embarrassment, or being labeled a problem. Sometimes we push ourselves into environments that are unsafe, painful, exhausting, or impossible to fully participate in because the social consequences of not attending can feel almost as difficult as the physical barriers themselves.
Now imagine having to make decisions like this about nearly every activity in your life.
Even going out with close friends can involve layers of planning and calculation that many non-disabled people never realize exist. A venue may advertise itself as “fully accessible,” but what happens when you arrive and the elevator is out of order? Or the accessible restroom is closed, blocked, or being used for storage? What happens when the accessible entrance is locked and no one is monitoring the call button?
What if all the accessible parking spaces are already taken? The nearest available parking space may technically exist, but it may still be too far away to safely walk. It may require stepping down curbs, crossing raised medians, navigating uneven pavement, or walking across large parking lots without places to stop and rest.
What if you meet friends at a restaurant only to discover that the only available tables are high tops, and you don’t have the balance or stability to safely sit on tall stools? What if the accessible ramp is located behind the building beside the trash dumpster, but the only available accessible parking is at the front, and there is no safe path between the two?
What if you arrive at an event and discover it is standing room only? Your friends may want to stay, but you know your body cannot tolerate prolonged standing. Do you leave? Do you stay and risk pain, fatigue, instability, or a fall? Do you become the person everyone has to accommodate? Do you pretend you’re fine so no one else feels uncomfortable?
For many disabled people, accessibility is not a simple yes-or-no question. It is fragile and conditional. One broken elevator, one missing chair, one blocked pathway, one inaccessible restroom, one steep curb, or one overcrowded room can completely change whether participation is possible.
What many people never see is the constant mental problem-solving happening in the background. Disabled people are often assessing risk, energy expenditure, recovery time, physical safety, accessibility barriers, social consequences, and exit strategies all at the same time, often while trying not to inconvenience others or draw attention to ourselves.
There are so many things disabled people have to think about before participating in ordinary life that many non-disabled people never even realize exist. That level of constant adaptation can become exhausting in ways that are difficult to explain to people who have never had to think this way simply to participate in everyday life.
There is another part of disability that people rarely talk about, and that is the mental load.
In conversations about relationships and family life, people often talk about the “mental load” carried by one partner. It is the invisible labor of constantly thinking ahead, remembering details, planning, organizing, anticipating problems, and managing responsibilities that other people may not even notice exist.
The same thing often happens with disability.
Disabled people frequently carry an enormous mental load that extends far beyond the disability itself. We are constantly planning, calculating, anticipating, adapting, preparing, and problem-solving in ways that many non-disabled people never have to think about.
We have to think ahead about accessibility, transportation, parking, seating, restrooms, distances, stairs, crowds, fatigue levels, recovery time, medications, food availability, weather conditions, pain levels, mobility equipment, and backup plans if something goes wrong.
We often have to think about whether there will be somewhere safe to sit, whether we will be able to get back up once we do sit, whether we can safely carry things while using mobility equipment, whether we will physically be able to make it from the parking lot to the building, and whether the energy required for one activity will leave us unable to function later that day or even for several days afterward.
Many disabled people are also constantly monitoring their own bodies in the background. We are calculating how much pain we can push through safely, how much fatigue is manageable, whether weakness or balance problems are becoming dangerous, whether we are overexerting ourselves, and how much longer we can continue before we physically need to stop.
In relationships or caregiving situations, some of this mental load may be shared between spouses, parents, adult children, family caregivers, or paid caregivers. But many disabled people carry much of this burden themselves, especially those who live independently or who do not have reliable support systems. In those situations, all of the planning, adapting, problem-solving, scheduling, advocating, monitoring, and contingency planning rests entirely on the disabled person’s shoulders.
What many people see is the physical disability itself. What they often do not see is the nonstop mental work happening behind the scenes just to make ordinary life possible. That invisible mental load can become exhausting in and of itself. This mental exhaustion is difficult to explain unless you have lived it yourself.
Accessibility is not just about whether a building meets legal requirements or whether a wheelchair can fit through a doorway. It is also about the invisible work disabled people do every single day to adapt, compensate, plan ahead, problem-solve, and continue participating in a world that often was not designed with our bodies, limitations, fatigue, pain, or safety in mind.
Many non-disabled people only see the visible parts of disability: the cane, the wheelchair, the rollator, the accessible parking placard, the elevator button, or the ramp. What they often do not see is the constant calculation happening underneath all of it: the endless assessing, adjusting, preparing, pacing, monitoring, and adapting required simply to get through ordinary life.
For many disabled people, accessibility is not a single accommodation or one simple solution. It is an ongoing process of constantly negotiating with our own bodies, with our environments, and with society’s expectations, while trying to remain safe, functional, included, and independent for as long as possible.
That invisible work is real. That exhaustion is real. And that constant adaptation is something many disabled people carry every single day, whether anyone else notices it or not.
I live with multiple chronic illnesses, including Psoriatic Arthritis, Ankylosing Spondylitis, Short Bowel Syndrome, Myotonic Dystrophy Type 2, and Sjogren’s Disease. I’m also a cancer survivor living with significant radiation damage.
None of these go into remission. There isn’t a cure.
There are treatments, but every treatment comes with trade-offs. Some treatments help one condition while making another worse. Sometimes I have to choose which problem to address, knowing something else will flare as a result.
Recovery from overexertion, or even common illnesses like a cold or the flu is slow. What might take someone else can fend off in a few days can take me weeks or even months, and sometimes even involves hospitalization.
Day to day, my life is very unpredictable. I still have some good days, some very hard ones, and everything in between. There are days when my body simply won’t cooperate, no matter how careful I’ve been or how much I want it to.
Because of that, I hesitate to make plans. It’s easier not to get my hopes up than to cancel at the last minute. When I do disappear for a while or go quiet, it usually means I’m dealing with more pain or fatigue than I can push through.
A lot of everyday things take more effort than people realize. Showering, driving, grocery shopping, cooking, eating, even walking can be too much some days.
Eating is especially complicated. With Short Bowel Syndrome, I can’t tolerate most fast food, restaurant food, or convenience meals. Spices, oils, sauces, fresh fruits and vegetables, most dairy, seafood, and shellfish are all off the table. I eat a very small range of foods, often the same meals every day, and even then, my GI system doesn’t always cooperate.
Socially, things have changed too. I don’t always answer honestly when people ask how I’m doing. It’s not because I’m trying to be dishonest. It’s because most of the time, the real answer doesn’t fit into a casual conversation, and I’d rather talk about something else.
I miss a lot of my old life. Teaching wasn’t just a job for me, it was my vocation. I miss it. I miss my hobbies, like embroidery, needlepoint, crafting, gardening, and taking day trips. I miss going to performances, the symphony, musicals, craft fairs, and home and garden shows.
Accessibility plays a role in that. Stairs, steep inclines, and venues that aren’t set up for people with mobility challenges make many places difficult or impossible for me to navigate. Not always being able to drive adds another layer.
Most of the time, my world is much smaller now. While others are working, traveling, going out, and meeting up with friends, I’m often at home or at medical appointments. Over time, those differences create a gap. Conversations get harder because our day-to-day lives don’t overlap the way they used to.
I do try to make the best of things. But I’m also realistic about the limits. I’ve spent a long time trying to push past them or work around them, and it doesn’t always work. At some point, constantly trying and falling short takes its toll.
So now, I focus more on managing what is, instead of chasing what used to be.
What’s been harder to come to terms with is how much my life now revolves around my illnesses. It’s not how I see myself, and it’s not how I want to be defined, but it’s there in almost every decision I make.
I used to be the person who stepped in to help, even for people I didn’t know. I put a lot of time and energy into making a difference for my students and being part of my community. That mattered to me.
Now, more often than not, I’m the one who needs help.
That shift isn’t easy. Asking for help doesn’t come naturally to me, and sometimes I don’t ask at all. At the same time, when no one offers and I truly can’t do something on my own, I’m left trying to figure out what comes next.
It’s a strange place to be, needing support while still not quite knowing how to live in that role.
Being chronically ill isn’t something I chose. It’s a lifelong reality I’m still learning how to live with, one day at a time.
