The Chronicles of Chronic Illness

I once imagined my future in wide shots: city skylines, full calendars, a life in constant motion.

What I live now happens in close-ups — pill bottles on my nightstand, ER waiting rooms, hands reaching in when mine can’t manage on their own.

This isn’t the life I thought I’d have.

As a teenager, I imagined something else entirely. By now, I’d be an attorney living in a big city — Chicago or New York, preferably — high-rise windows, late nights, dozens of friends, a calendar full enough to complain about. I thought I’d buzz with purpose and certainty. I wanted a life from which I didn’t need a vacation. The kind you see in movies or read about in novels. A life that felt undeniably mine.

I wanted a home — both metaphorical and physical. I wanted to leave the town where I grew up and never look back. I wanted a sweeping, fairytale love — the kind that survives impossible odds and comes out stronger on the other side. I thought happiness would be loud. Visible. Earned.

But life, as it turns out, is not a movie or a novel. At least not for most of us.

Most of us move through life assuming the essentials will always be there — our health, our independence, our friends, our family. We take them for granted simply because we can. One of the hardest lessons I’ve had to learn is how quickly those assumptions can disappear.

I live with several incurable, chronic medical conditions. They shape every part of my life, quietly and relentlessly. They shrink my world in ways I never anticipated. They keep me from the life I once imagined — and from many of the basic, everyday tasks most people never think twice about: brushing my teeth, washing my hair, folding laundry, cooking a meal. Things so ordinary they feel invisible until suddenly they’re not.

My illnesses don’t just affect me; they pull other people in. They require help. Daily help. Real help.

Help looks like my mom driving me to the ER and sitting beside me for ten grueling hours.
It looks like my brother sending $50 so I can eat when both my body and my bank account are empty.
It looks like my grandmother waiting for my call after two weeks with the flu — needing only to hear my voice, to know I’m okay.

It looks like my brother and his wife pulling up chairs beside my hospital bed for nine long days.
It looks like my dad calmly walking me through medication options, side effects, risks.
It looks like a friend listening to me sob over hair in the shower, promising it will be okay.

This is a life I never planned. A smaller life in many ways. A slower one. A life measured less by milestones and more by endurance. A life that often hurts.

But it is also the life that taught me what matters.

Family, I’ve learned, is not something you take for granted. Whether it’s the family you were born into or the family you gather along the way, they are your people. The ones who show up when it’s inconvenient. The ones who stay even when your lives begin moving in different directions. The ones who fight for you when you’re too tired to fight for yourself.

They are not a consolation prize.
They are the point.

The life I once imagined never arrived. And yes, I still grieve that. I grieve the ease, the independence, the version of myself I thought I’d become. I grieve the wide shots — the big scenes, the certainty, the illusion that everything would keep expanding.

But what I’ve learned — slowly, painfully — is that this life, the one I actually have, is still a home.

It doesn’t look like I thought it would. Love arrived in closer frames than I imagined. Purpose sounds quieter than I expected. But it is here. It is real.

And it is steady.

And most importantly —
it’s not going anywhere.

Ableism doesn’t always announce itself.
It doesn’t always arrive as cruelty, confrontation, or rejection.

Sometimes, it arrives quietly.

It shows up in longer gaps between messages.
In invitations that stop coming.

In check-ins that feel increasingly surface-level — careful, distant, polite.

Nothing is said outright. Nothing is explained. There’s no single moment you can point to and say, “this is when it changed.” Just a slow, confusing shift where connection thins and warmth cools, and you’re left wondering what you did wrong — even though nothing about who you are has changed.

Except your body.

Chronic illness has a way of revealing this kind of silence. Not because it makes you unworthy, but because it makes others uncomfortable. It disrupts ease. It asks for patience. It introduces unpredictability into relationships that were built on assumptions of consistency and convenience.

And suddenly, the relationships that once felt steady begin to feel conditional.

Ableism Isn’t Always Obvious

When we talk about ableism, we often imagine something overt — cruel comments, exclusion, or blatant discrimination. But in friendships, ableism is often quiet and unintentional.

It looks like disappointment framed as concern.
Frustration disguised as honesty.
Distance explained as “life just getting busy,” or 

“Our lives are headed in different directions.”

The message beneath it all is subtle but clear: this is harder than I expected.

And instead of examining why discomfort exists, it’s easier to pull away.

When Friendship Depends on Ease

Many friendships are built on ease — shared schedules, similar energy levels, mutual flexibility. That ease is often mistaken for strength.

Chronic illness disrupts that illusion.

Plans become tentative.
Energy becomes finite.

Rest becomes necessary rather than optional.

For some people, these changes feel like a loss. Not because connection is gone, but because the friendship no longer fits neatly into their lives.

When staying requires adaptation, some people choose to leave instead.

Convenience Is Often Mistaken for Compatibility

There is an unspoken cultural belief that “good” friends are low-maintenance. That they are always available, upbeat, flexible, and undemanding.

But this standard quietly excludes disabled bodies.

Accommodations are misread as neediness.
Setting boundaries is mistaken for withdrawal.
Honesty about limitations is labeled as negativity.

What’s actually being tested isn’t commitment — it’s comfort.

The Emotional Cost of Being “Too Much”

When relationships strain under the weight of illness, the burden often falls on the sick person.

We question ourselves.
We minimize our pain.
We apologize for the needs we didn’t choose.

Over time, this teaches a dangerous lesson: that love is something we earn by being easier, quieter, and less visible.

That lesson doesn’t create connection. It creates self-erasure.

A Necessary Reframe

Chronic illness does not make someone difficult.

It reveals where other people struggle to stay.

Some people can adapt.
Some people can’t.

Neither response is inherently cruel — but only one can sustain real connection.

Friendship that survives illness isn’t built on convenience.
It’s built on flexibility, honesty, and a willingness to stay present even when things change and get difficult. 

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If you’re reading this and recognizing yourself in it — in the quiet distance, the unanswered messages, the way relationships began to feel fragile once your body required more care — I want you to hear this clearly:

You are not asking for too much by needing care.
You are not difficult for having limits.

And you are not unlovable because your body requires more consideration.

It is not your job to contort yourself into something easier to keep.
It is not your responsibility to make others comfortable with your pain.
And it is not a failure to need flexibility, patience, or understanding.

The problem is not that chronic illness makes relationships harder.
The problem is that we confuse ease with love — and convenience with commitment.

Real connection isn’t measured by how little you need.
It’s measured by who is willing to stay present when things change.

If someone can only show up for you when you are well, available, and effortless, they are not responding to you — they are responding to a version of you that never had to endure this.

You are still worthy of friendships that adapt.
Of relationships that bend without breaking.
Of people who don’t disappear when your life becomes less convenient.

And if you are in the middle of that silence right now — unsure, grieving, questioning yourself — please know this: the quiet does not mean you are unlovable. It means you are learning who has the capacity to stay.

It’s a Friday night, I’m at home watching some dumb comedy on Netflix. My friends are out — with friends, with partners, living their lives — and I’m at home in the middle of a pain flare, recovering from a week and a half of pure hell with the flu.

Having a pain flare after the flu feels like some kind of cosmic joke. But if I’m being honest, I’m not surprised. Viruses hit hard, and my body is still trying to recover.

When I had COVID back in 2022, I felt like I was dying. I had a fever of 104 degrees. My head throbbed so intensely it felt like it was going to explode. Every joint and bone in my body felt like it had been lit on fire. And as if that wasn’t enough, COVID then destroyed my immune system — quite literally.

Post-COVID, I was left with a Primary Antibody Deficiency. My immune levels were comparable to those of a chemotherapy patient — and I’ve never had chemo.

For the next three years, I was plagued with illness after illness: pneumonia, bronchitis, more upper respiratory infections than I can count, and strep throat at least a dozen times. That’s just naming a few.

I was never a sickly child. Sure, I grew up with migraines and joint pain — but this was different. This was a whole new ballgame. And for three long years, I pleaded and begged my primary care doctor to run labs. To find something. Anything. I knew in my gut something was wrong.

But what was I met with?

“Your labs are normal. You’re just unlucky.”

You read that right. That was an actual message from my former doctor. Unlucky.

I even begged for a referral — just to see someone else who might look deeper — and I was still denied. And while three years felt endless, I know others in the chronic illness community who waited ten years or more to be taken seriously. An entire decade of doubt, disbelief, and dismissal. Let that sink in.

After those three grueling years, I finally found a new primary care doctor.

She listened. Actually listened. She took notes. She asked questions. She spent over an hour with me when she was probably allotted twenty minutes. And that same day, she referred me to an immunologist — who saw me that very afternoon.

Two doctors listening to me in one day? It felt unreal.

That appointment was filled with what ifs and how comes. I laid everything out, unsure if I would be believed again. But she listened. She ordered what felt like sixty vials of blood and ran every test imaginable.

Finally, I thought. I’ll have an answer.

And here’s something people don’t always understand about chronic illness: sometimes we hope a test comes back abnormal. Not because we want to be sick — but because we want to be validated. Because we know our bodies. And we know when something is wrong.

Two weeks later, I went back for my results.

“Primary Antibody Deficiency,” she said.

I looked at my mom, who had come prepared to support me no matter the outcome, and felt a wave of relief wash over me. Not relief that something was wrong — but relief that I wasn’t imagining it. I wasn’t unlucky. My immune system had essentially stopped working.

I tried to hold back tears, unsure how I was supposed to feel.

And this is the part of chronic illness no one warns you about: grief.

The grief of a new diagnosis. The grief of wondering how life will change. The grief of uncertainty — will the treatment work? Will it get worse?

The hardest part of grief, for me, is the what-if.

What if my doctor had listened sooner?
What if I had started treatment earlier?
What would my life look like now?

Those questions can consume you. Knowing someone should have listened. Knowing years were lost.

Chronic illness isn’t just about symptoms and treatments — it’s about what’s lost in the waiting, the dismissals, and the years spent fighting to be believed.

We know our bodies. We aren’t doctors or nurses — but when we say something is wrong, we deserve to be believed. That’s all we want. To be taken seriously. To be treated with dignity.

We often think grief only exists when someone dies — the loss of a person. But grief takes many forms. And those of us living with chronic illness experience it every single day.

Grief that I’m stuck at home tonight, watching the world move on without me.
Grief that my life would look different if I’d been diagnosed sooner.
Grief that my calendar is already blocked for my next antibody infusion — already bracing myself for the exhaustion that will follow, knowing the entire next day will be lost to recovery.

Grief for the plans I don’t make anymore.
Grief for the energy I ration instead of spending freely.
Grief for the version of myself who didn’t have to think this hard about her body.

And somehow, I still manage to hold onto gratitude.

Gratitude that this treatment nearly saved my life. Gratitude that because of these infusions, I no longer get sick at the drop of a pen. That I have some semblance of a life now.

And grief, all over again, for the three years that could have been different — years where I would have suffered less, and lived more, if I’d been believed sooner.

That grief doesn’t exist on its own. It layers itself onto everything else.

It’s overwhelming. On top of fighting insurance, managing symptoms, juggling appointments, injections, and infusions.

But even in the grief — even in the what ifs — I remind myself how hard I fought to get here. How much advocating it took. How many times I kept going when I wanted to give up.

Those of us living with chronic illness are strong — not because we chose to be, and not because we want praise for surviving. We are strong because we have had to become fluent in pain, persistence, and self-advocacy just to exist. We endure in ways that often go unseen.

If you’re reading this while grieving a body that no longer feels like home, a life that looks different than you imagined, or years lost to being dismissed — I want you to know something: your grief is valid. Your exhaustion is justified. And your anger, sadness, and longing are not signs of weakness. They are proof that you care deeply about the life you are still trying to live.

You are not broken for mourning what could have been. You are human.

And even on nights like this — when the world feels like it’s moving on without you — your life still has meaning. Your voice still matters. Your experience still deserves space.

You are not alone in this.
You never were.
And you are worthy of being believed.

This past week, I learned just how unforgiving the flu can be. I’m still not fully over it, but the 103-degree fever is finally gone.

That experience is exactly why I need to say this clearly: if you are immunocompromised, or if you live with any chronic or inflammatory condition — mask up. The flu, COVID, and countless other viruses are spreading like wildfire right now.

I spent seven hours in the ER on Saturday with a migraine so severe I couldn’t see straight or think clearly. I could barely get myself into a chair in the waiting room before settling in for the long, grueling wait to be seen. Every single person around me was coughing or vomiting. IV poles lined the hallways as people waited — also sick, also desperate for help.

Going to the ER is a nightmare on its own. Going while you’re already sick and immunocompromised? It’s hell.

To make matters worse, once I finally got a room, the doctor initially suggested a medication I already have at home — as if I waited seven hours and paid thousands of dollars for something sitting in my bathroom cabinet.

So what did I do? I calmly and respectfully explained that I tried that medication at home just hours earlier, with zero improvement. I shared that it’s usually my go-to rescue medication, but this time it didn’t work at all, which told me something was off.

And sure enough, the influenza test came back positive.

And without a doubt, then comes the familiar internal debate:

Do I advocate for myself and risk being labeled as “drug-seeking?”
Do I over-explain to prove I’m competent and informed?
But if I’m too articulate or too alert, will they decide I’m not actually that sick?

It’s a constant balancing act — one that patients with chronic illness know all too well. I’ve spent enough cumulative hours in ERs and urgent care waiting rooms to qualify for an unpaid internship —and while it never gets easier, knowing what to say, and how to say it, helps.

Here’s how you can advocate for yourself in the ER or urgent care — especially when you’re already exhausted.

🏥 Choose Your ER Strategically — When You Can.


Not all emergency rooms are equal. Some have longer wait times, fewer providers, or are consistently over capacity. If your symptoms allow you to choose, ask up front how many rooms are full or what the estimated wait looks like.

That said, know this: at any moment, an ambulance or trauma helicopter can arrive and push everyone else to the back of the line. That’s triage — not a judgment of your pain. Because of this, you need to be clear and specific about why you’re there so they can triage you correctly.

🤒 Be Precise About Symptoms — Down to the Details.


This is not the time for vague explanations. Say exactly what you’re experiencing, when it started, how it’s changed, and how it differs from your baseline.

Instead of “I have a migraine,” explain:

• How severe it is and how it’s affecting your daily activities. And yes, they’ll probably want a number on the infamous 1–10 pain scale.
• What symptoms are new or alarming?

• What you’ve already tried at home?

• What isn’t working?

Clarity helps providers triage you appropriately — and helps protect you from being dismissed.

⛑ Lead With Your Medical Context.

If you are immunocompromised, chronically ill, disabled, or medically complex, say it early — not as an afterthought. It frames the entire interaction.

“I’m immunocompromised and have a history of chronic migraines. This episode is different because…”

That’s not oversharing. That’s necessary context.

💪🏻 Bring someone with you if you can.


I know not everyone has a support system, but if you do — use it. When you’re in pain, nauseous, or cognitively impaired, having someone with you can make all the difference.

They can help:

• Advocate when you’re too exhausted to explain.
• Remember timelines and details.
• Witness interactions.
• Ground yourself emotionally in a chaotic environment.

Needing support does not make you weak — it makes you human.

✅ Know What Hasn’t Worked — And Say it.


You don’t need to sound like a medical textbook, but being able to say “I’ve already tried X and Y with no relief” matters. It helps providers avoid assuming you haven’t already tried common treatments or taken steps to address the issue.

If you don’t know medication names, describing outcomes or side effects still counts.

📣 Say What You Need Without Apologizing.


You are allowed to say:

• “That medication hasn’t worked for me before.”

• “This feels different from my usual symptoms.”

• “I’m concerned because of my underlying condition.”


You are not wasting anyone’s time. ER care is not a favor — it’s a service.

🤨 Ask What the Plan is.
And Then Again.

If hours pass without updates, it is reasonable to ask:

• What are we waiting on?
• What’s the next step?

• What would escalate or change this plan?


Transparency is part of care.

👩🏻‍🦽Advocate Without Performing Pain.


You do not need to cry, exaggerate, or collapse to be taken seriously. You also don’t need to minimize your pain to be “easy.”

Your pain does not have to be visible to be real.

🚨 Protect Yourself From Unnecessary Exposure.


Wear a mask. Ask for one if you don’t have it. Use hand sanitizer. If possible, ask to wait away from people actively vomiting or coughing.

This isn’t paranoia — it’s harm reduction, especially if you’re already immunocompromised.

💊 Trust Your Instincts — Say Something if it Feels Off.


If a medication, a comment, or a sudden dismissal doesn’t sit right, speak up. You are allowed to ask for clarification or request a second opinion.

Silence often benefits the system, not the patient.

😵‍💫 Remember, “Calm” Does Not Mean “Fine.”


Many chronically ill people have learned how to appear composed while suffering. If needed, say it plainly:

“I may look calm, but this is severe for me.”

We shouldn’t have to translate your pain — but unfortunately, as chronically ill patients, sometimes we have to.

✍🏻 Document when you can.


Try to keep track of the provider and nurses’ names, medications offered, and major decisions — even if only mentally. If something goes wrong later, details matter. It can also help to note how long you’ve been waiting for specific tests or treatments and any estimated timelines you’re given for results or discharge.

And remember, leaving without answers is not failure.
If you’re discharged without relief, clarity, or dignity — that outcome is not a reflection of how sick you were. The reality is that many hospitals are extremely understaffed and operating with limited beds.

I remember being sent home after an ER visit where I was certain I would be admitted. But the truth is many hospitals have understaffed or completely full floors and are often only able to admit the most critical cases.

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Navigating the ER while chronically ill or immunocompromised is exhausting, dehumanizing, and unfair. Use what helps your care, ignore what doesn’t — think of these tips as tools you can carry with you when you need them most.

You are not dramatic.
You are not difficult.
You are not asking for too much.

You are asking for care — and that is always reasonable.

I was reading an article in The New Yorker about one woman’s experience being diagnosed with an autoimmune disease. She wrote, “My experience of feeling unwell for years before I got a diagnosis turns out to be typical.”

That line stopped me cold — because it was my experience, too. And it’s the experience of nearly every chronically ill person I know.

So why does it take years for doctors to take us seriously?

I once woke up from a full-blown colonoscopy — at twenty-four years old — and was told almost immediately that my symptoms were due to anxiety and “not having my life together.” Yes, a doctor said that to me — point blank.

Did it ever occur to him that maybe my life wasn’t together because my health was so poor I couldn’t work? Couldn’t maintain friendships? That I couldn’t function properly? Or was the answer always going to be the same: have you tried yoga?

I’ve heard countless stories like mine—chronic, widespread pain or complex symptoms dismissed with, “your labs are normal,” or “your scans look fine,” as if normal results are the end of the conversation rather than the beginning of deeper investigation.

If one test is “fine,” seek another. And another. Keep seeking until something shows up — because at least then, your suffering becomes legitimate.

Because we know our bodies — we’ve lived in them long enough to know when something is wrong.

So I fought — for referrals, for second opinions, for diagnoses. And that fight is exhausting. It’s all-consuming. It drains you mentally and physically, often while you’re already operating on empty.

Often, many of us secretly hope for abnormal results — not because we want to be sick, but because we want proof. Validation. An answer. Something tangible to confirm the pain isn’t imagined.

The cruel irony of chronic illness is that many conditions don’t show up clearly on scans — or don’t show up at all. Others have no cure, only symptom management. People used to laugh when I was upset over “normal” labs. But all I wanted was someone — anyone — to say, yes, something is wrong.

People don’t talk enough about how repeatedly being told you’re “fine” teaches you to doubt yourself, to swallow pain quietly, to grieve an answer you may never get. Over time, that grief doesn’t disappear — it settles. And eventually, it finds a voice.

And when we find our voice, we look for others who have been carrying the same weight.

If you’re still searching for answers, you’re not alone. There are more of us than you think, navigating appointments, appeals, referrals, and waiting rooms that blur together over time. If you’re tired, it’s okay to pause. Rest is not failure. But don’t let the pause turn into doubt.

Trust what your body is telling you. Keep records when your memory is foggy. Ask for clarification when something doesn’t make sense.

Seek support — in friends, in community, in people who don’t need convincing because they’ve lived it too. Let them remind you of what you already know on the days you start to forget.

Change doesn’t happen all at once.
It happens slowly, unevenly, and often quietly.

But it does happen when enough of us stop apologizing for our pain — when we stop allowing ourselves to be dismissed and minimized. It happens when enough of us believe we’re worth listening to.

Living with chronic illness has taken a lot from me. Time. Ease. Certainty. The version of my life I thought I’d be living by now.

But it’s also given me things I never would have learned any other way.

This isn’t a gratitude list for suffering. I don’t believe pain exists to “teach lessons,” and I don’t think chronic pain is some cosmic character-building exercise. If I could give it back tomorrow, I would.

Still — when you live inside this reality long enough, you adapt. You learn. You become things you didn’t set out to be.

And that matters.

It Taught Me What Strength Actually Is

For most of my life, I believed strength meant pushing through—ignoring discomfort and proving I could handle anything, quietly.

Now I know better.

Strength isn’t pushing through — it’s responding honestly to what your body is asking for. It’s asking for help without apologizing. It’s saying no when the world expects a yes. It’s advocating for yourself in rooms where you’re dismissed, doubted, or rushed.

It’s not loud or impressive. It’s quiet. It’s often invisible. And it rarely looks the way people expect strength to look. But it’s real.

I am strong — not because I endure silently, but because I show up honestly in a body that makes everything harder.

It Gave Me Endurance I Never Asked For

Chronic illness doesn’t happen in a single moment. It unfolds slowly, relentlessly, day after day.

Living this way has taught me how to endure — not in a dramatic, heroic way, but in the quiet way that keeps going even when nothing is resolved. I’ve learned how to survive uncertainty. How to live without timelines. How to keep moving forward without knowing when things will improve.

Endurance isn’t about toughness. It’s about staying.

And I’ve stayed.

It Made Me Resourceful and Creative

When your body doesn’t cooperate, you get creative.

I’ve learned how to problem-solve on the fly. How to modify, adapt, reroute, and reimagine. I’ve found new ways to rest, work, connect, and care for myself. I’ve learned how to make life accessible when the world isn’t built for me.

Chronic illness made me scrappy. Really, scrappy.

I know how to navigate broken systems, hunt for information, advocate across specialties, and piece together solutions when none are handed to me. I don’t wait for permission to need something — I find a way.

That skill didn’t come from comfort. It came from necessity.

It Taught Me How Deeply I Know Myself

Living in this body has made me attuned to details in ways most people never have to be.

I know when something is off — even if labs say otherwise. I know my limits. I know my triggers. I know what I can push through and what I absolutely cannot.

Chronic illness taught me to trust myself.

In a world that constantly tells sick people they’re exaggerating, that trust is radical.

It Changed How I See Worth

I used to measure my value by productivity. By output. By how much I could do, achieve, or carry.

Chronic illness stripped that away.

It forced me to confront the idea that I am worthy even when I’m resting. Even when I’m canceling plans. Even when my biggest accomplishment of the day is surviving it.

That lesson is ongoing — but it’s one I’ll carry forever.

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I didn’t choose this life. I didn’t choose this body or these diagnoses.

But I’ve learned how to be resilient without glorifying pain. Resourceful without burning myself out. Strong without abandoning myself.

Chronic illness has taken a lot from me — but it hasn’t taken my ability to adapt, to create meaning, or to grow in ways that matter to me.

Those with chronic illness are not defined only by what our bodies can’t do.

We are also defined by what we’ve learned to do anyway, in spite of our circumstances.

If you’re living with chronic illness and reading this, I hope you pause long enough to see yourself clearly—not just through the lens of what’s been taken from you, but through everything you’ve learned along the way. The strength, creativity, and endurance you carry didn’t appear by accident. They were built slowly, painfully, and honestly.

You are not “just surviving.” You are adapting, learning, and showing up in ways most people will never have to. And that matters more than you’ve been taught to believe.