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The Anger Stage No One Warns You About

By Antonia @ Unremarkable Me

Nobody tells you there’s an angry stage of chronic illness. Not the soft, candlelit kind of sadness you see on awareness posters. Real anger. Red-hot, scream-into-a-pillow, “how is this my actual life?” kind of rage.

And the worst part? You’re not even angry because you’re ill—well, not just that. You’re angry because of the gauntlet of absurdity that follows once you dare to seek help. You’re angry at how long it takes to be believed, and how quickly you’re dismissed. At the way doctors make snap judgments about your character before you’ve even sat down. At being treated like a nuisance for asking the bare minimum—answers, support, honesty.

For me, it started when I was diagnosed with Ehlers-Danlos Syndrome (EDS) and something called Mixed Connective Tissue Disease, after years of symptoms. The lovely woman at the MSK clinic tested me, confirmed it, and referred me to a rheumatologist. Eight months later—because of course—two doctors sat me down, having clearly already decided what kind of patient I was.

Before I could even explain a symptom, I was told:

“Your lab work is fine. There’s nothing wrong with you. You don’t have EDS.”

At the time, I didn’t even know what EDS was. I was hoping—maybe naïvely—that they would tell me. Instead, I got slapped with condescension, disbelief, and a stinging sense of whiplash that took me three years to fully process.

I asked the doctor—politely at first—to look at me while he spoke. I rely heavily on lip-reading because I’m deaf. And also, you know, basic manners. His eyes finally met mine just in time for a second doctor to chime in with his bit of nonsense.

So I replied before telling him to pip down:

“Cool story. But are you saying, in your professional opinion, I don’t have EDS?”

He looked me dead in the eye and said:

“It’s better this way. You wouldn’t be able to get a mortgage.”

I left that appointment emotionally wrecked—and, if I’m honest, a little embarrassed about the nuclear meltdown that had just unfolded. I’d said a few too many choice words, the kind that tend to echo long after the door swings shut. And oh, swing it did. As I opened the doctor’s office door to leave, nurses scattered from their station like startled pigeons, and the poor patients in the waiting area looked genuinely horrified. To be fair, I wouldn’t have wanted to be the one going in after that showdown either.

So I left, full of self-doubt and a desperate craving to be “normal” again.And—spoiler alert—it didn’t work. All I did was bury myself deeper in the exhausting cycle of pretending I was okay while my body screamed otherwise.


Chiari, COVID, and the Case of the Vanishing Neurologist

Then came the Chiari malformation diagnosis—another plot twist in the medical soap opera I never auditioned for.

It started dramatically. I was hospitalised with suspected meningitis, my brain feeling like it was being crushed. They talked about decompression surgery. Terrifying, but at least it meant someone was paying attention. Then—of course—I tested positive for COVID-19.

Everything went on hold. I was discharged three weeks later with no follow-up, no contact, and no clue what was coming next. And then? Nothing. I chased for four years while my symptoms worsened.

Eventually, I saw a neurologist. He seemed promising, said he’d follow up after new scans and blood work. Four weeks passed. Then six. Then Christmas. Eventually, I was passed around for two full days before someone finally gave me the real reason no one had called:

“Your neurologist doesn’t have a secretary.”

I laughed. Then I cried. Not just from frustration—but from the sheer absurdity of it all. Like, I didn’t realise my access to healthcare was hanging on the existence of a single admin hire. That’s the kind of detail that makes you feel like your whole body is a punchline.


The Real Damage Is Invisible

This is the part people don’t see. They see someone managing. Maybe someone angry. But they don’t see the exhaustion of being gaslit. Of having to advocate for yourself when you’re in pain, when you’re confused, when you just need someone else to hold the map for a while.

Over time, this doesn’t just wear you down—it changes you. I’ve said things I never thought I’d say. I’ve spoken to people in ways I’m not proud of. Once, I had to use that tone—you know the one. Your mum’s mate Karen, turned up to eleven. I hated it. Hated how it felt. Hated that I was driven there.

Afterwards, I told the doctor exactly how awful it felt to talk like that. I told him no one should be spoken to that way—even if their professionalism had left the building hours ago. Because I don’t want to be that person. That’s not who I am. But the truth is, when you’ve been dismissed enough times, you start to raise your voice just to make sure you’re heard.

So yes, I’ve had to learn to own that too. To say sorry when my frustration overflows. To recognise that being treated badly doesn’t give me a free pass to become someone I don’t want to be. That’s the harder part of navigating chronic illness—not just managing symptoms, but managing yourself when the world keeps failing you.


I’m Still Angry—But I’m Also Still Here

I’m still angry. But not in the way I was at the beginning. It’s quieter now. Less like a scream, more like a pulse. A signal. A reminder that I deserve better, —and so does everyone else in this situation.

Because here’s the thing: anger is a survival response, not a personality trait. It kept me alive when no one else seemed to care. It forced people to listen when whispering didn’t work. But it’s not the end of the story. It’s just one part of learning how to live in a body that demands more attention than the world wants to give it.

And these days? I’m less interested in being angry all the time, and more focused on becoming the person I still want to be—even when the system makes it harder. A person who speaks up, yes—but also apologises when she crosses a line. A person who sets boundaries without burning bridges. A person who refuses to disappear.

So no, I’m not grateful for the journey. But I am proud of how I’ve walked it—even when I had to crawl. Even when I was crying in car parks. Even when I didn’t know who I was anymore.

I’m still here. And I’m not playing nice. But I’m still playing fair.


If You’re Struggling, You’re Not Alone

If reading this brought up something for you—whether it’s frustration, grief, or that quiet voice that says “I can’t keep doing this”—please know that what you’re feeling is valid. You are not overreacting. You are not imagining it. And you are not alone.

Living with chronic illness, especially in a system that doesn’t always listen, can be deeply isolating. But there is support out there—from people who get it.


UK-Based Resources

Online Communities

  • Instagram & TikTok: Search hashtags like #ChronicIllness and #Spoonie for honest, funny, and heart-wrenching content from people who’ve been there.

  • Facebook Groups: Look for private groups focused on EDS, Chiari, and MCAS. They’re often full of kind, supportive souls and helpful insights.

  • Reddit:

And if all you can do today is rest, cry, or rage silently into a mug of tea—that’s still surviving. You’re doing better than you think. Be gentle with yourself. You’ve come through things most people wouldn’t understand.

 
 
 

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