Remember that health is not guaranteed. Chronic illness or disability can strike anyone: young or old, rich or poor, careful or careless. You can eat perfectly, exercise faithfully, stay positive, and do everything “right,” and it still might happen to you.
No amount of money, no circle of family or friends, no dedication to your job or your dreams can prevent it if it comes. Chronic illness and disability arrive uninvited, often without warning, and always without permission. They are not punishments, not failures, and are not consequences of not trying hard enough. They are simply realities of life that any person may face.
So, appreciate the ordinary things your health allows you to do: working, moving freely, making plans, and being independent. Those things feel permanent until the day they aren’t. If illness or disability takes hold, it can alter every part of your life, no matter how much you’ve worked for or built.
Gratitude for your health doesn’t mean living in fear; it simply means recognizing that what you have today is not promised tomorrow. Live fully, with compassion for those who are traveling a more difficult road, and with awareness that you could be standing in their place at any moment.
Sincerely,
Chronically Ill, Disabled People Who Never Thought They’d Be in This Position
I often wonder why people, most of whom have never even heard of my illness, let alone lived with it, believe they’ve discovered a ‘cure’ that somehow escaped the knowledge of doctors and researchers who have dedicated their entire careers to this condition. Yet, I’m expected not only to be grateful for these unsolicited and often dangerous suggestions but also to gamble with my health and well-being on the basis of hearsay and unproven treatments.
Why would I take such a risk? Why should anyone? And why would someone without medical expertise in this specific field think it appropriate to try to persuade me otherwise?
I have to ask, why would someone even suggest this to me, much less expect me to try it? Do they not consider the possible outcome if their ‘miracle cure’ goes wrong?
Is my health so trivial to them that they can toss out reckless advice without thought for the consequences? Or is it simply that my honesty about the depth of my illness makes them so uncomfortable that they feel compelled to fill the silence with quick fixes, regardless of how harmful those fixes might be?
At times, it feels less like concern and more like dismissal; as though they care more about easing their own discomfort than about truly supporting me. And if that is the case, then I cannot help but wonder: do they care about me at all?
I also find myself wondering, do they believe I’m not really trying to get better? Do they truly think there’s some easy “cure” I’ve simply overlooked, as though I haven’t spent years seeking help, researching treatments, and enduring therapies?
Sometimes, I even question whether they assume I don’t actually want to get well, as if living with a serious illness is somehow a choice. That thought crosses my mind more than I care to admit, and it stings; not because it’s true, but because it reveals how little they understand the reality of living with a chronic condition.
I have doctors and medical professionals who have tried, and who continue to try, every option available. They haven’t given up, and neither have I. But part of this journey means facing reality: that not every illness has an easy fix, and that sometimes the best we can do is manage, adapt, and keep searching for ways to live as fully as possible.
I’ve endured the fallout of failed treatments: side effects strong enough to drop an elephant, one new medical issue piling onto another, dangerous drug interactions, worsening symptoms, and an ever-growing list of physical and mental limitations, all in the name of being open-minded and willing to try anything that might offer relief. And yet, despite all that I’ve risked and suffered in pursuit of wellness, there are still people who imply that I’m not ‘doing enough’ or that I’ve somehow overlooked an easy fix. Their casual suggestions dismiss not only my life-experience but also the years of effort, sacrifice, and resilience it has taken just to keep going.
The truth is, my persistence is proof of my strength. I have faced setbacks that could have broken me, yet I continue to show up, to adapt, and to live as fully as I can within the limits my body places on me. My willingness to keep trying; despite pain, disappointment, and uncertainty, shows that I haven’t given up on myself or on life. If anything, it proves that resilience is not about finding a cure, but about finding the courage to carry on in the face of what cannot be cured.
Like the old English proverb says, “That which cannot be cured must be endured.” I have endured. I continue to endure. Not because I’ve given up, but because true strength lies in living fully, even when there is no cure.
When someone is struggling with a chronic illness, or the associated mental health issues that come from having an incurable illness, chronic pain, loss of income and lifestyle, losing their purpose in life, and having to start over in many cases, what they need is your compassion and empathy.
Telling them things like “Oh, you’ll be fine!” or “God wouldn’t give you anything you can’t handle!” is not really helpful. When you say things like this, you may make yourself feel better, but you aren’t making them feel better. Instead, you are minimizing their condition and their concerns.
Changing the subject (so they won’t dwell on it) is not useful. Believe me, they are already dwelling on it! Chronic pain makes them dwell on it, even if they don’t show it.
Offering them any advice when you have absolutely no knowledge about their chronic condition is not only unhelpful, but it can also be dangerous!
What they need most is a safe place to express their concerns, their fears, their frustrations, without having to hold back. They need to be included. Most of all, they need to be heard, loved, and supported.
When people say, “I never saw the signs,” about someone who is struggling, it often isn’t true. The signs are usually there — quiet, subtle, easy to miss — not only by friends and family, but sometimes even by the person living with chronic illness.
Living with a long-term illness is more than managing symptoms. It’s coping with losses: loss of health, career, independence, purpose, or even identity. Those losses often come with fatigue, grief, frustration, and emotional pain. Recognizing when you’re struggling is not weakness; it’s the first step toward getting support.
Hiding the Struggle
Many of us deny how bad things are, because we don’t want to burden others or admit (even to ourselves) how overwhelmed we feel.
We may avoid conversations that leave us vulnerable.
We might fear venting in case it pushes friends away.
Negative thoughts creep in: “I deserve this. I’m being punished. I’ve failed. This is my fault.” These beliefs can drive us into deeper isolation.
The Isolation Cycle
When we feel optimistic, we make plans, but when pain or fatigue that force us to cancel, guilt and disappointment push us further into withdrawal.
Isolation fuels depression, which fuels more isolation. It becomes a toxic cycle that feels impossible to break.
Even enjoyable hobbies fade away, not because we don’t want them, but because our bodies won’t cooperate. This deepens the sense of helplessness and grief.
Everyday Signs of Struggle
Self-care slips: irregular meals, skipped showers, neglected laundry, unkempt appearance. These aren’t just a “lack of motivation.” They’re signs of emotional and physical overload.
Sleep disruption: oversleeping, staying awake all night, or restless exhaustion from pain or worry.
Irritability: lashing out disproportionately is often the language of distress, not anger.
Cognitive fog: losing your train of thought, abandoning books or TV shows because you can’t follow them, forgetting simple tasks. Your energy is going into survival mode, leaving little energy left for focus.
Talking only about illness: when symptoms dominate every conversation, it’s often because life feels consumed by medical trauma, leaving little else to share.
The State of Your Space
Our homes often mirror our internal state. Signs of struggle may include:
Clutter piling up in unusual places.
Unopened mail, unpaid bills, unanswered texts.
A heavy or dark atmosphere, poor lighting, and constant background noise to drown out inner thoughts.
This doesn’t always mean laziness or disorganization. It may simply reflect emotional turmoil, physical limits, or sheer exhaustion.
Recognizing the Signs in Yourself
If you notice these patterns in your own life, it doesn’t mean you’re failing. It means you’re human, living with something unimaginably hard. Chronic illness is not just a physical condition; it’s an ongoing emotional and mental challenge.
When you recognize the signs in yourself, try not to judge them. Instead, see them as signals: I need help. I need connection. I need compassion from others and from myself.
Introduction: Psoriatic disease, short bowel syndrome, myotonic dystrophy, a congenital and progressive disability that limits my mobility, severe damage from radiation treatments, more damage from metastatic cancer therapies, and ankylosing spondylitis — most of the time, I manage. I find ways to cope. But then this wave comes, and I’m struck down by sadness, jealousy, and a crushing sense of loss. I know these flashes of anger are not unwarranted, yet they often leave me drowning in feelings of failure. Sometimes, I turn this anger and sense of failure inward, resenting my weakness, simply because I’m not able to cope as well as I think I should. And so, this poem rises from the quiet, intractable ache of being human.
When Silence Trembles
by Jan Mariet
Let me be sad. Let me be angry. Let me feel jealous and cheated and swallowed up by all the ugly emotions that come before acceptance or that come crashing back on a bad day.
Sometimes, I just can’t make peace that my life is chained to chronic pain, crushing fatigue, and GI horrors most people couldn’t imagine in their worst dreams.
Most days, I hold it together. I deal with it. I even accept it.
But then there are days when it slams into me like a tsunami, leaving me terrified, furious, heartbroken, and drowning in confusion.
On those days, nothing I do can quiet the anguish because it roars too loudly.
Chronic illness shakes me to the marrow, twisting my cries into silent, unheard whimpers.
Always blame the teacher, coach, or other people whenever your child gets in trouble, so they never learn to take responsibility.
Believe your child, without question, even when all evidence shows differently, so they never learn honesty or accountability.
Do everything for them, so they never learn how to do things on their own.
Fight all their battles, so they never learn to express themselves clearly or stand up for what they believe in.
Give them rewards for nothing, so they learn to expect praise without effort.
Give them everything they want, so they never learn to choose wisely or work hard to earn something.
Ignore your child’s bad behavior, or excuse it with “they’re just tired” or “kids will be kids,” so they never learn right from wrong.
Let your partner treat you poorly in front of them, so they learn that abuse, disrespect, threats, and violence are a normal part of a “loving” relationship.
Micromanage their every move, so they never learn independence or confidence.
Never set boundaries, and let them make the rules, so they never learn respect for authority or limits.
When you do give them a consequence, let them whine until you give in, so they never learn that rules matter.
Never let them fail, so they never learn resilience or how to recover from setbacks.
Protect them from uncomfortable feelings like disappointment, boredom, or frustration, so they never learn how to cope.
Protect them from consequences, even when they deserve them, so they never learn that actions have results.
Put their happiness above all else, even if it means letting them disrespect others, so they never learn empathy or consideration.
Share adult burdens with them, like your financial, emotional, or relationship problems, so they never learn healthy boundaries.
Solve all their problems for them, so they never learn problem-solving skills or perseverance.
Treat them like your best friend instead of your child, so they never learn to respect authority or feel secure.
Compare them to other kids, so they never learn to value their own unique strengths.
Never apologize when you’re wrong, so they never learn humility or how to repair relationships.
Just follow these 20 steps, and you’ll have a 30-year-old who can’t fill out a job application and still relies on you for video game subscriptions.
I want to live fully, with purpose, independence, and stability, but the pain, fatigue, and flares of my disability and chronic illness pull me back every time, no matter how hard I try.
I keep trying anyway, knowing full well it will end in defeat, because the alternative is just giving in to the pain and emptiness. The hardest part is the difference between the life I image, and the only one my body can actually endure.
At times, I accept my fate. There are times I rage against it with such determination and strength that I could rebuild our world into the paradise it was always meant to be. But like a moth drawn to the intense flame, it always leads to the most predictable end – being engulfed, so temporarily, in the warm of the flame, and then abandoning the heat and light to the coldest, darkest end, laying crushed and helpless near the burned ashes in the pale morning glow. And inside, realizing that none of it made the least bit of difference.
Today is my 38th straight day of being alone, having nothing in particular to do, no particular contact with anyone else, and stretching mundane tasks across endless days just to have something, anything, to do. It is the 38th day of being crushed by the isolation of being totally and utterly useless and unreliable.
I’m not even particularly sad about this. I’m not anxious, or unhappy, or even overwhelmed. I’m just here, existing without any meaningful purpose, occasionally starting projects I know my physical body will never be able to complete, and feeling completely engulfed by the unending tedium that fills each endless day.
I make no decision more important than do I go to the grocery store today to pick up three items, or wait and go in two days and pick up six items. I have no plans more important than do I go to the drug store and walk around, or sit around at home staring a wall or out the window.? Do I stay at home, or walk a short distance even though it means pushing past pain that I’m so good at hiding that no one could scarcely guess how intense it is?
Sad, happy, defeated, empty – the words mean nothing except a dull monotony of minutes ticking by… Hours ticking by… Days ticking by… A life that is ticking by…
Although I am starved for conversation, I rarely call or contact anyone. The only thing I have to share is the monotony of endless empty minutes, or disjointed memories of a life from so long ago, and once-interesting stories that lost their luster a dozen tellings ago.
After years of medical treatments, hospitalizations, recoveries, re-hospitilizations, attempts at returning to a purposeful life followed by inevitable failure after destructive failure, what do I have worthy of being said, much less shared? I bore myself, and hear my own pain in my forced positive conversations.
I am caught in an endless cycle of adversity, isolation, partial recovery, resiliance, rebuilding, re-emerging, strength, pushing above and beyond my puny physical abilities, and crushing defeat. Do I wallow in the agony and isolation of defeat, or try again? I always try again, and the cycle repeats, endlessly. At this point, even I recognize the futility of unsubstantiated hope. I am that moth draw to the flame that will ultimately burn my very soul, with the only alternative the coldness of laying, spent and lifeless, in the cold, damp morning sand.
I have no inspiration left. I go through the motions, through the expected rhythms of daily life in complete exile, sometimes pushing myself in meaningless tasks, sometimes allowing myself to just give in the monoteny of sleep and scrolling, and always, always, being filled with the incredibly emptiness of near-complete isolation.
In many ways, I wish I was sad, or dejected, or depressed, because those things eventually end. Instead, I am completely engulfed in waves of numbing futility. If I care, I will be disappointed. If I try, after only the tiniest bit of success, I will be overwhelmingly crushed by inevitable failure. If I even dare to hope, I won’t just be disappointed, but will be overcome by desolate failure. I haven’t given up. I’ve just realized the futility of trying to be something I have no ability to be.
Today is yet another day, of empty, useless minutes ticking by. I think this numbness I feel is my decision that it is better to feel nothing at all than to continue in this endless cycle. Is a choice between giving in or repeating a painful, self-defeating, endless cycle really any choice at all?
