Month: March 2025

Society often frames disability and chronic illness as the result of personal failure—a lack of willpower, a moral shortcoming, or irresponsibility. If only we tried harder, if only we pushed through the pain, if only we accepted that the systems built for the non-disabled majority should rightfully exclude us for the so-called greater good. This has become the quiet, unspoken mantra of the many.

But here’s the unshakable truth: you can live with unrelenting integrity, responsibility, and care—and still be disabled. Disability is not a verdict on character. It’s not something earned or deserved. It’s a reality that can touch anyone, no matter how virtuous or determined they are.

It’s so odd when people say they don’t let their illness define or limit them. Do they think the rest of us simply surrender, letting our illnesses strip everything away without resistance?

We celebrate the disabled people who defy every barrier, who “overcome” every challenge, every limitation, every impossible obstacle. But who cheers for those who spend everything they have just to take the next step, who wrestle with pain and fatigue to survive another day? Who celebrates the quiet, unseen victories of simply enduring when endurance itself feels impossible?

Are we somehow less because our bodies are different—because they are fragile, damaged, or simply function in ways you don’t understand? Is our worth diminished simply because of the way we are built? Does our ability to contribute to this world become meaningless because our mobility, dexterity, or appearance defies your narrow expectations?

The answer to these questions lies not in us but in you. Your choice to withhold compassion, to deny empathy, to strip us of the dignity every human being deserves — that was your decision. Your refusal to acknowledge our God-given right to pursue life, happiness, and meaning — that choice was entirely yours.

It speaks volumes, not about our value in the grand scheme of things, but about yours.

When considering the things I can and cannot do in life, I try to take a moment to truly acknowledge all that I have accomplished and the blessings that currently fill my life. I have a comfortable home, access to medical care, enough food, and resources to handle emergencies. My life is enriched by a few good friends, a spectacular best friend, and a little dog who brings constant companionship and joy. While finances are often stretched, I’ve managed to avoid significant deprivation, which is no small thing.

Living here in Florida feels like its own kind of gift. The sunny weather, year-round blooming flowers, and my three-wheeled bike allow me to enjoy morning rides nearly every day. My dog brightens every encounter, winning over neighbors and strangers alike, and making new friends daily.

I’m fortunate to live by a serene pond, surrounded by a remarkable variety of wildlife: ducks, cranes, hawks, eagles otters, turtles, and countless others. My garden flourishes with vibrant hibiscuses, bougainvilleas, and blooming milkweed that attract butterflies and pollinators. These things remind me of the beauty that is all around me, even on my tougher days.

When my physical limitations weigh heavily on me, I can find escape in books, allowing my mind to wander freely even when my body cannot. Despite challenges, I can still build a life with meaning and joy. I know it’s important to reflect on all the opportunities and blessings I have rather than focus solely on my struggles.

Some days, I can walk short distances with little trouble. Other days, I use an upright rollator, canes, or even wheelchair services. My abilities vary—some days I move with relative ease (though never without pain), and others, I can’t manage even a few steps. My balance and strength shift unpredictably, reminding me daily to listen to my body and respect its limits.

It’s not always easy to stand firm in those limits, especially when others misunderstand or dismiss them. On good days, people may assume I should always function at that level, and their disbelief or invalidation can tempt me to push myself beyond what’s safe. I’ve learned—sometimes the hard way—that doing so often leads to pain, injury, and days of immobility.

Still, I recognize my progress. I’m better at navigating my limitations now, though I’m far from perfect. When someone dismisses my pain or assumes I’m lazy or faking because I can’t do something I did before, it invalidates what I know to be true about myself: my “normal” is ever-changing. Between neuropathy, joint inflammation, fatigue, and muscle exhaustion, I must adapt daily—sometimes even hourly.

If you’ve never experienced this, I understand why it might be hard to recognize or comprehend it. But please understand that your inability to see my limitations doesn’t make them any less real. If you cannot accept this, I will protect my well-being by limiting how much I rely on you for emotional support.

Instead of focusing on what I can’t do, I have found strength and empowerment in recognizing what I can do. My abilities may be fewer, but they hold great value. I’ve learned to adapt, to problem-solve creatively, and to remain resilient in the face of adversity. These qualities allow me to live within my limits while continuing to find joy and purpose.

I have the intelligence to educate myself, the self-awareness to reflect deeply, and the courage to advocate for my needs. I’ve learned to persist—kindly but firmly—until I get the support I require. While there are days I feel exhausted and overwhelmed, I remind myself that others might face similar challenges. Often, when I struggle to find strength for myself, I find it by helping them.

Ultimately, I know my resilience is my power. By focusing on my strengths and embracing my abilities, I can live a life of meaning, even in the face of on-going challenges.

Dreams are a funny thing. In my dreams, I can do things, like sitting cross-legged, running down the street, climbing huge flights of stairs, and walking pain-free without the slightest limp or wobble.

I can partner dance. I can sit on the floor and get up with ease. I can soak in a tub. I can hike up a mountain. I can paddle board. I can hold a grandchild on my hip. I can have a grandchild. I can water ski. I can do beautiful needlepoint and embroidery.

I can play golf, and ride a jet ski. I can climb a ladder, and paint the door. I can visit quaint shops in totally inaccessible historic buildings. I can kneel down at church. I can spin around in a field like Julie Andrews in the Sound of Music. I can even line dance without losing my balance at every turn.

I wish I couldn’t do these things in my dreams. It all seems so real. It all feels so wonderful.

And then I wake up, and it’s gone.

In my dreams, it feels real. I feel so alive and so connected to the world. Then the morning comes, the dream is over, and I painfully try to get out of bed.

Our government is rolling back the ADA requirements that enable people with disabilities to exist and function in a world that is already less-than-accessible. These protections, once a lifeline, are being sacrificed to pad the profits of companies that are already immensely wealthy. This isn’t just an issue of greed—it’s a fundamental failure to value the humanity of people with disabilities.

Right now, our ability to work, to support our families, and to live with dignity is under attack. For those who can’t work due to the severity of their disabilities or a lack of accessibility, the safety net is already riddled with holes, leaving many condemned to a life of poverty. And the changes being made now will make it worse.

Americans are losing access to healthcare, especially through Medicaid, a program that provides vital medical treatment to millions of people, including children. Let this sink in: 36% of Medicaid recipients are children. Our government is choosing to deprive children of the medical care they need to survive and thrive, simply because they are poor, or because they are disabled. How can we call ourselves a compassionate society if we allow this to continue?

People with disabilities did not choose their circumstances. We did not choose to be born this way, to endure accidents or illnesses that left us disabled, or to grow old and face the challenges that aging naturally brings. And yet, instead of support, we are met with barriers—both literal and systemic.

The truth is, accessibility benefits everyone. A building with open-access ramping welcomes all. A system designed with inclusion in mind uplifts entire communities. So why are we allowing new buildings to be designed with grand stairs and inaccessible layouts, locking out 25% of the population? Why are we gutting the very regulations that make it possible for us to participate in society?

The answer is as simple as it is infuriating: Too many decision-makers see no value in accessibility because they see no value in us. And we cannot let this stand.

Here’s what you can do:

• Speak up. Contact your representatives. Demand that they protect the ADA and expand accessibility. Ask them to support Medicaid and other healthcare programs that serve the most vulnerable.

• Amplify our voices. Share stories of people with disabilities. Show the world that we are not a burden but a vital part of society.

• Support accessibility in your community. Advocate for accessible design in public spaces, workplaces, and businesses.

• Hold corporations accountable. Push back against the greed that prioritizes profits over people.

• Educate yourself and others. Learn about the challenges faced by people with disabilities and share that knowledge with those around you.

This is a fight for equality, for dignity, and for the basic human rights of 25% of our population. People with disabilities are not asking for handouts; we are asking for the opportunity to live, work, and contribute. But we cannot do it alone.

Stand with us. Fight with us. Together, we can create a world where accessibility is the norm, not the exception—a world that values every person, regardless of ability.

It is time to wake up. Time to recognize that people with disabilities are not a burden, but an integral part of our society – a society that claims to value inclusion, equality, and opportunity for all.

These attacks on accessibility, medical care, and the foundational protections of the ADA are not just attacks on the disabled community – they are attacks on our shared humanity. We cannot stand by as the doors to opportunity, healthcare, and dignity are slammed shut for 25% of our population.

We deserve better. Our children deserve better. Our communities deserve better. The strength of a society is measured not by how it treats its wealthiest and most privileged, but by how it uplifts its most vulnerable. Accessibility and accommodations are not luxuries – they are necessities that allow us to live, thrive, and contribute.

To anyone listening, I urge you to stand with us. Amplify our voices. Advocate for accessibility, inclusion, and fairness. Demand that our government and corporations do what is right, not what is easiest or most profitable. Together, we can build a future where everyone, regardless of ability, is seen, heard, and valued. We are ALL worth it.

There are so many hardworking people who poured their hearts and souls into life, only to be brought to their knees by chronic illness. I was one of them. I used to believe that hard work could conquer anything, that if I just gave my all, I could overcome any obstacle. But chronic illness taught me a humbling truth: sometimes, no amount of effort can fix what’s broken. And that’s not a failure—it’s reality.

This realization can feel devastating, like a piece of who you are has been taken away. But it doesn’t mean you’re not enough. It doesn’t mean you’re weak or broken. It means you’re human. Chronic illness forces you to find strength in surrender, grace in struggle, and courage in simply existing.

Even when the road seems impossible, you are still worthy of love, purpose, and joy. You are enough—not because of what you do, but because of who you are. This journey may reshape you, but it can also uncover a resilience and wisdom you never knew you had. Keep going, even on the hardest days. You are more powerful than you realize.

My battles with cancer taught me something else, just as important. The clock is ticking for all of us, though we can’t see it. So, cherish the ones who love you deeply, and let them know how much they mean to you.
Don’t wait for the “perfect moment” to find joy—create it now.

Happiness isn’t something you’ll find later, and life is far too precious to leave any love or laughter unspoken. Embrace every day, because you never know when your time will run out. Live fully and let gratitude guide your path.

Today, I’m resting. I don’t feel well. For a few days my right arm has been aching (probably because I’ve been doing too much on the computer, which is hard with my tendon damage from enthesitis.) I’ve been trying to do a lot of graphic design (something I love but haven’t been able to do for ages because of my psoriatic arthritis.) Yesterday, I basically took a break from the computer to try and let my arm recover.

However, I decided to work on my Bird of Paradise plant yesterday late afternoon, just as something to do. I needed to deadhead old blooms, and cut back leaves — because Birds of Paradise can grow and spread so quickly that you have to remove stems on a fairly regular basis. I had to put on special gardening sleeves and leather gloves (the leaves from a Bird of Paradise are sharp and can slice your skin easily, and my skin is very fragile.)

Halfway through, I realize it was too much. My arm hurt all the way up to my shoulder. I wanted to finish pruning the plant. I did a little more, and then did something I rarely do — I stopped even though it was only half done. I thought I had stopped in time, but unfortunately, with PsA and enthesitis, by the time you realize you’ve done too much, you are way past the point where stopping will take care of things.

I was thirsty when I went inside, so I got a bottle of water. I have a special opener for water bottles because my hand is too weak to open them. Every time I lifted the water bottle, my right hand shook so violently I couldn’t even drink out of the bottle. (I finally set it on the table, put a straw in it, and just bent over and sipped the water without touching the bottle, because I kept spilling it and dropping it.)

I had a flashback to when I was first diagnosed with psoriatic arthritis and enthesitis, and how I dropped everything, broke so many plates and glasses (before I started using plastic cups and paper plates) and couldn’t even cut my own food or use a fork. It made me realize how far I’ve come. Other than this episode (which is called a “flare”) I’ve been so much more able in the past 2-3 years when it comes to cutting food, holding a cup, and not dropping a plate.

This is a minor setback brought on by feeling good and doing too much. I have no doubts that with a few days rest and compression, it will subside. When I think back to how bad it used to be, I’m “almost” grateful for this reminder of how far I’ve come.

I may still have a lot of limitations when it comes to physical things, but I think back to 5 years ago, to how bad it was, and I realize what a blessing my biologic is, and how much it enables me to do. Sometimes, pain is (almost) a good thing.

Once you’ve had cancer, it’s like living in the shadow of an unseen threat—always waiting for the other shoe to drop. Is it really gone? Will it return? (Or in my case, when will it strike again?) How much more can my body endure?

What many don’t realize is that the battle doesn’t end when treatment does. After aggressive chemo and radiation, recovery isn’t just a matter of weeks or months—it can take years, and sometimes, you never truly get back to where you started. Cancer treatment doesn’t just target the disease; it leaves behind a trail of collateral damage.

For me, that meant losing my small intestine, four sections of my colon, and my gallbladder, all casualties of pelvic radiation. And when the cancer returned—this time in my neck, at the base of my tongue, and in my throat—I endured chemo and 67 grueling radiation sessions. The cost? My salivary glands, many of my teeth, and nerve damage that left the left side of my face forever changed.

But here’s the thing about cancer: I survived it. And that, above all else, is worth everything.

These are quotes attributed to author, teacher, disability advocate, and cancer survivor Jan Mariet. For the benefit of those who are visually impaired or using a text reader, a written list of quotes is included below.

Chronic illnesses may not be curable, but they can be managed—sometimes with medicine, sometimes with adaptability, but always with resilience.

Not all battles are visible; many fight unseen illnesses with courage that goes unnoticed.

A progressive disability doesn’t just change abilities—it transforms how life is lived, one step at a time.

Cancer is more than a diagnosis; it’s a journey of strength, uncertainty, and relentless hope.

Support isn’t just offering help; it’s showing up, listening, and reminding someone they are not alone in their struggle.

Fatigue and pain don’t always announce themselves; they creep in unpredictably, turning even the simplest tasks into challenges.

Sometimes, the smallest gestures—a ride to an appointment, a home-cooked meal, or a few kind words—carry the greatest weight.

You don’t need the perfect words to comfort someone—just the willingness to listen, to care, and to be there.

False optimism doesn’t heal, but genuine empathy does—acknowledge the fear, honor the struggle, and stand beside them through it all.

Illness does not define you—your strength, resilience, and spirit do.

Even the strongest need support—no one should have to battle alone.

A flare is not a failure; it is a reminder that your body deserves care, not blame.

Healing isn’t just about medicine; it’s about patience, understanding, and knowing you are not alone.

Some battles are invisible, but your strength in fighting them shines brighter than you know.

Setting boundaries isn’t selfish; it’s essential to being able to support those who need you.

Uncertainty can be overwhelming, but remember—you are stronger than the hardest days you face.

True support isn’t about fixing everything; it’s about standing beside someone, even in silence.

Your diagnosis is not the end of your story—it’s just one chapter in a life still worth living.

Never be afraid to seek a second opinion—your health deserves every possible option.

Survival statistics are numbers from the past—your future is still being written.

An optimistic outlook isn’t denial; it’s fuel for the fight ahead.

Focus on what is strong, not what is wrong—your resilience will carry you through.

Cancer is a journey, not an identity—don’t let it define you.

Asking questions isn’t a sign of fear, but a sign of strength in taking control of your care.

Even in the hardest moments, lifting someone else up can help lift yourself.

Every treatment, every struggle, and every victory is part of your unique cancer journey—embrace it with courage.

You are more than a patient; you are a fighter, a survivor, and a person with a life beyond cancer.

There is no ‘right way’ to share your cancer diagnosis—do what feels right for you.

You don’t owe anyone an explanation about your medical condition—it’s your story and it’s your choice.

Telling others about your cancer diagnosis is not just about sharing news; it’s about finding support and strength.

Focus on what you can do, not what you can’t—your resilience is your power.

Taking charge of your health is not a burden; it’s a path to empowerment.

A positive outlook doesn’t mean ignoring reality—it means choosing to rise above it.

Support is a two-way street—surround yourself with those who uplift, not those who drain.

Even in your most difficult moments, you have the right to set boundaries and protect your peace.

Managing your health is an act of self-love—advocate for yourself, ask questions, and demand answers.

Blaming yourself for the past won’t change the present—focus on living your best life now.

You are not your illness; you are a person who happens to have an illness.

Surround yourself with those who understand—finding your tribe can bring strength and joy.

Honoring your limitations isn’t weakness; it’s wisdom in action.

Envy is natural, but focusing on what you can do brings true contentment.

Let go of unrealistic expectations and embrace what is possible—your happiness depends on it.

Chronic illness and disability are thieves, stealing the joys of daily life piece by piece.

It’s hard to stay connected when the only stories you have left to tell are about pain.

The more you have to cancel, the less you get invited—until your social life disappears entirely.

Chronic illness not only takes your strength but also the simple pleasures others take for granted.

The world is not as accessible as it should be, making inclusion feel like an impossible dream.

Watching life go on without you is a quiet kind of heartbreak.

How many times can you be the scorekeeper in the kickball game of life before you stop feeling like a player?

The genetic roulette wheel favors some and forsakes others, even within the same family tree.

We don’t get to choose the conditions we inherit, but we do get to choose how we live with them.

Fortitude, perseverance, and adaptability are just as much an inheritance as blue eyes or dimples.

Chronic illness may shape my life, but it does not define my spirit.

Joy doesn’t erase pain, but in fleeting moments, it becomes the best medicine there is.

Life does not deal out illness or hardship fairly—we simply have to make the best of the hand we are dealt.

A single beautiful sunset won’t cure disease, but for a moment, it can make life feel lighter.

Some inherit strength, others illness—many of us inherit both, and that’s how we endure.

Focusing on what I can do, rather than what I can’t, is the key to finding joy despite adversity.

When life changes are beyond your control, you have two choices—let it break you or learn to adapt.

Minimizing someone’s struggles by reminding them others have it worse only invalidates their very real feelings and experiences.

When we tell others their problems aren’t significant, we are essentially judging their life journey and trivializing their pain.

It’s painful when loved ones react to our changes with blame, pity, or misguided attempts at a ‘cure’ instead of offering genuine support.

Some people pretend our limitations don’t exist, which can make us feel gaslit and further isolated in our journey.

Relationships often suffer when loved ones can’t accept the reality of chronic illness or disability, making the struggle even harder.

Chronic illness and disability often create a loneliness that cannot be solved by social skills or seeking out others; it’s the kind that mourns lost possibilities and dreams.

Sometimes, your soul is begging to be happy, but you just can’t find the way to start. That fake smile turns into pure joy before you even realize it.

Tragedies, struggles, hardships, and challenges affect us all. We do not choose them, and we cannot avoid them. We can only choose how we react to them.

Even when circumstances in our lives change, joy remains if we focus on the small things of beauty that surround us all.

Joy hides in plain sight. Even when darkness surrounds us, we can admire the stars!

Stop trying to please others or live up to other people’s standards. Be who you were meant to be.

Chronic illness doesn’t just slow you down—it reshapes your entire life. You wake up each day with limited energy, and before you even begin, you’re already running on empty.

Pain, fatigue, immune issues—they all chip away at your strength before you’ve had a chance to do anything meaningful. And then there are the endless doctor’s appointments, the phone calls fighting for prescriptions, and the insurance battles that swallow hours of your day.

Managing energy becomes a survival skill. You learn to ration every ounce of strength, carefully calculating what you can afford to do without pushing yourself past the breaking point.

But what happens when the math doesn’t work – when no matter how carefully you budget your energy, there’s just not enough to get through everything life demands? In a world that idealizes constant productivity, chronic illness feels like a losing battle.

Workplaces expect relentless output, and pushing past your limits is often mistaken for ambition and dedication. But for those of us with chronic illness, that “push” comes at a steep cost—one that spills over into our health, our personal lives, and our mental health.

Another issue we have to deal with on a daily basis is doubt – the unspoken skepticism from others—Are you really that sick? People often wonder, are you even trying? After a while, you start questioning yourself, wondering if maybe, somehow, this is your fault. When your abilities shift so drastically from one day to the next, even you begin to wonder if you’re imagining it.

Most days, it feels like you’re barely staying afloat, fighting just to keep your head above water while the world expects you to swim with ease. But while others glide effortlessly, you’re dragging the weight of chronic illness—heavy, relentless, and unyielding. It’s not about swimming beautifully; it’s about surviving the tide and not drowning under the weight of your illness.

Chronic illness doesn’t just affect your health—it reshapes your entire life, including your ability to work. You may have to adjust how you work to cope with pain, stiffness, or limited mobility. In some cases, working may no longer be an option, leading to financial struggles that add another layer of stress.

As your life shifts in ways you never expected, feelings of anxiety, uncertainty, and loss of control can take hold. The unpredictable nature of your illness, the financial strain of being underemployed or unable to work, and the constant worry about the future can be overwhelming.

The stress of living with a chronic illness doesn’t just affect your emotions—it wears on every part of you. Irritability, sadness, loss of interest in things you once loved, exhaustion, and sleep disturbances become daily battles. Over time, that stress can harden into frustration, anger, hopelessness, and even depression.

Under normal circumstances, the body’s stress response is temporary—once a threat passes, things return to normal. But when stress is constant, when your body always feels under attack, the fight-or-flight system stays switched on.

This prolonged stress response disrupts nearly every bodily function, increasing the risk of anxiety, depression, digestive issues, chronic pain, heart disease, high blood pressure, stroke, and cognitive problems like memory loss and difficulty focusing. It can also lead to weight fluctuations, sleep disorders, and muscle tension that never truly goes away.

Over time, chronic stress rewires how you react to the world. Small frustrations that others shrug off can feel unbearable. With every repeated activation of the stress response, the toll on your body and mind deepens, making an already difficult illness even harder to bear.

Navigating Life with a Chronic Illness

Coping with a chronic illness goes beyond managing symptoms—it requires adapting your entire lifestyle. For me, accepting a new normal is one of the hardest parts.

The physical pain and emotional toll are constant, but talking about them feels like admitting defeat. Personally, I don’t want to burden others or seem “weak,” so I stay silent about the ways my condition makes me feel like life is passing me by.

No matter how much I wish my illness didn’t exist or that it didn’t limit my choices, it’s impossible not to dwell on what I’ve lost. Some days, managing it feels so overwhelming that I question who I even am anymore.

Taking an active role in my healthcare—learning all I can about my illness, making notes on what works and what doesn’t, and working with doctors instead of waiting for answers—helps me feel more in control. But finding a doctor who truly listens and is committed for the long haul – that’s another battle entirely.

As my abilities shift and my limitations grow, I have to constantly reevaluate my goals and redefine what a meaningful life looks like. It’s an exhausting, never-ending process—but it’s the only way forward.

Most of us know the basic definition of a chronic illness –- an illness that lasts months, years, or for the rest of your life, that changes or limits your activities of daily living due to pain, fatigue or immobility, and that may have some type of treatment, but no actual long-term cure.

But here are some things people with chronic illnesses wish you knew about it.

• “Better today” doesn’t mean healed—it just means “not as bad today.”

• Being forgotten cuts deeper than being excluded.

• Feeling good is terrifying because the of the crash that always follows.

• Good days come with guilt—because of the good days, some people refuse to believe the bad days are real.

• Saying “no” all the time makes you feel like a burden, not a friend.

• Managing a chronic illness is an unpaid, exhausting, full-time job.

• Resting isn’t lazy, but it still feels that way.

• Doing my best today is very different than my best on another day.

• You mourn the person you could have been.

• Life moves forward without you, and you’re stuck watching from the sidelines.

• You want to do things. You believe you can. You try—only to crash and burn. Sometimes, you’re so desperate to be well enough that you convince yourself you are, only to fail miserably.