When the Perfectionist Overachiever with Chronic Illness Hits Her Limit

I spent four years proving that Transverse Myelitis (TM)— a spinal cord inflammation that left me paralyzed from my diaphragm down — wouldn’t stop me from living the life I wanted. I moved countries, advanced my career, and continued my advocacy work nationally and internationally. From the outside, I was thriving. But in the harsh reality? The illness is here. It is still here and very very present every second of every day.

The Facade of Recovery

Living with chronic illness, living in recovery with transverse myelitis when it’s only partial recovery and all your struggles are invisible — combined with the fact that I’ve been achieving so much despite it — creates this impossible contradiction.

One year after the attack, in 2022, despite barely 60% recovered, I took the crazy leap of faith to accept a job in Estonia — moving halfway across the world entirely on my own to make the lifelong dream of experiencing life in Europe come true. I’ve traveled 17 countries in Europe since, advanced in my career, continued my advocacy work, spoke at conferences, and from the outside, totally look like I’m living my best life and thriving despite it all.

But behind that facade? I’m constantly managing unpredictable bladder and bowel symptoms that can strike at any moment — the humiliation of accidents, the anxiety of not knowing if I’ll make it to a bathroom in time, the mental exhaustion of always calculating where the nearest toilet is. There’s the chronic fatigue that feels like carrying invisible weights, the way my right leg remains weaker, the daily pill regimen, the constant monitoring of my body’s signals. Sometimes my nerves just disconnect — I’ll be walking and my leg won’t lift properly, sending me tripping over myself. The constant unpredictability of if and when my own body will fail me next.

It’s betrayal after betrayal from the body that’s supposed to be my safe haven, my home. The place I should be able to trust above all else keeps letting me down in ways I can’t predict or control.

Every day requires constant mental calculations that healthy people never have to do: Can I make it through this meeting? Do I have enough energy for grocery shopping after work? Should I cancel plans because my body feels heavy today or that I have to attend events tomorrow so I need to preserve my energy? Friends are going to a standing concert — I physically cannot stand for hours without support, so I can’t even consider it. It’s the grief of losing my “normal” life and having to rebuild an entirely new version around limitations I never chose.

Then there’s navigating the healthcare system in a foreign country with language barriers and cultural differences, trying to explain complex symptoms to doctors who don’t speak your native language, while battling endless bureaucracy.

You’d think that given people are sick, it’d straight be given to get the care they needed right away. But in reality, all the paperwork, hoops to jump through, administrative maze are all there acting as additional barriers. Not forgetting that all of it just intensifies your fatigue and you’re doing all of this with the already limited energy you have whilst working a full time demanding job and maintaining your own apartment.

But this level of constant performance while managing invisible symptoms creates its own trap. When you’re known as someone who “handles everything,” who figured out how to build a life abroad despite chronic illness, who speaks at conferences about thriving with chronic illness, certain expectations form — from others, but mostly from yourself. The pressure to maintain that image becomes suffocating.

When High Performance Becomes High Pressure

So when I finally hit my breaking point, when I could no longer maintain that level of performance, it felt like falling from a great height — and the landing was brutal. At first, I could still show up and smile, still deliver at work while internally drowning— that’s high-functioning depression in action. But eventually, even that facade crumbled.

I could barely drag myself to work anymore. The breakdowns came hard and fast — sobbing, hyperventilating during working hours, my brain stopped working and couldn’t process things, rage that felt volcanic and grief that felt endless. Deep, incredible frustration consumed me as my recovery journey had become completely stagnant. I was exhausted from fighting a battle that seemed to have no end in sight. My body was keeping score of every pushed limit, every ignored signal. Chronic burnout, as they say — when your nervous system finally says ‘enough’ as a last-ditch effort to protect you from total breakdown.

All of this happens behind closed doors, behind the carefully curated social media posts and professional achievements. So I can’t blame those who, when they heard I was taking a break to focus on my health, asked me “huh, did you relapse?” “But you’re okay, right?” “You look okay though”

Man, define okay.

Because they don’t know and they don’t understand that I have never been “okay” in the traditional sense since 4 years ago, September 2021. The battle never ended. I never got back to normal or achieved full recovery. What I did was get just functional enough to make life work on my own terms, and I made the fierce decision that I wouldn’t let this disease stop me from living the life I wanted.

So “good enough” — with all its baggage and limitations — became what I settled for, while people saw me looking normal, successful, and living my dream life as if TM was just something that happened to me in the past.

The Daily Reality No One Sees

This makes everything infinitely harder to cope with, especially during the rough patches, because every single day serves as a constant reminder of everything I’ve lost, everything that was stolen from me, everything I’ve had to sacrifice, and everything I now have to constantly manage and build my life around.

It’s not like my psoriasis, which after years of treatment finally reached remission. With psoriasis, I can now live my life largely free from its daily impact, free from the pain and suffering it once caused. I can breathe and live past its pain.

But Transverse Myelitis? This thing has woven itself into the very fabric of my existence. It sticks to my skin and bone, invading every single aspect of my life and every single thing I do, like my life is its own goddamn business.

The Complex Truth

And sure, sure, perspective changes help. There’s meaning and purpose probably behind all of these. That I should be grateful that I’ve come so far and in a position of privilege that I can reach this point of recovery and afford access to different kinds of treatments to help me fight. I KNOW, trust me, I know and am awfully aware of it.

But that doesn’t diminish the unfairness of it, the pain it causes, the things it robbed me away from, the heavy struggle, uncertainty, hopelessness that I have to carry and push through every goddamn day.

I can be grateful and still be grieving.

I can be hopeful and still be scared.

I can be fighting and still be mad about it.

The most painful part? I’d spent years crawling out of a victim mindset. After living with severe psoriasis since childhood, I was drowning in self-pity and limitation until 2019 when I finally broke free and started truly living. I founded a patient organization focusing on empowerment, built my reputation as an international advocate, became a voice showing the world that chronic illness doesn’t mean a diminished life. My whole identity became built around the belief that patients shouldn’t just survive — they should thrive.

Yet there I was, barely surviving myself, drowning behind the very success story I’d become.

The Medical System That Fails Us

What makes it even worse is how lonely and isolating this all has been.

Doctors don’t give a shit about how this affects your life, your mental and emotional state. As long as your inflammation markers look good on paper, you’re dismissed with “you’re good to go.” Some don’t even have basic human decency — I’ve sat through appointments where doctors showed zero empathy, treated me like a medical file rather than a person.

Some doctors straight up gave up on me when my recovery plateaued. No roadmap for continued improvement, no referrals to specialists who might help, just a shrug and “this might be as good as it gets.”

Others showed a different kind of ignorance — one kept asking me “What are you stressing about? Isn’t life already good in Europe?” as if living with TM was just a matter of perspective, dismissing entirely how chronic illness adds layers of burden and stress to every single aspect of existence. As if achieving things externally somehow negates the daily internal battle.

But perhaps the most damaging was the gastroenterologist who, when I explained my severe constipation that leaves me bloated like a pregnant woman, followed by unpredictable bowel movements I can’t control, simply shrugged and said, “What do you want me to do? It’s already good that you can at least poop and you don’t need a stoma. Pooping in your pants a bit is fine.”

It had taken everything in me to even bring up these humiliating symptoms, to be that vulnerable with a stranger about the most private parts of my life. And this casual dismissal of symptoms that control every aspect of my day — the stress of taking medication not knowing if I’ll have bathroom access when it kicks in, the humiliation, the constant anxiety — reduced to “fine.” It’s like being told — “well, at least you’re not dead yet.”

So here’s what they don’t tell you: doctors aren’t trained to help you navigate the daily reality of living with chronic illness. They can’t tell you how to manage the crushing fatigue while maintaining a career, how to date when your body is unpredictable, or how to maintain friendships when you’re constantly calculating your energy like a phone battery. They fix what’s broken in the immediate sense, but they don’t help you rebuild a life around what remains broken.

And family and friends— as much as the good ones genuinely try to understand, listen, and sit in the mud with you — at the end of the day, the weight of figuring it all out and get through it falls entirely on you.

The Weight of Doing It All Alone

I end up having to figure out what kind of help I actually need and what options even exist — because I learned the hard way that no one’s going to hand me a roadmap. I go to appointment after appointment, repeating my medical history over and over again (which, by the way, becomes its own source of trauma), hoping each new doctor will have answers, solutions, or at least some goddamn empathy.

I try treatment after treatment, giving each one a fair shot while constantly reminding myself that healing isn’t linear and recovery takes time — even when months pass without noticeable improvement and I start wondering if I’m fooling myself. Or sometimes I notice improvements but then take steps backward, making me scared to acknowledge progress and cautious about hope, because it hurts to be optimistic only to get crushed over and over again.

All of this while trying to function as a normal adult in a world that absolutely was not built for people like me. People with chronic illnesses, with limited capacity and unpredictable energy and symptoms, trying to maintain careers and income when managing the illness itself is already a full-time job.

But here’s the cruel irony: we need money to survive, and good quality healthcare costs money. Yet chronic illness often means reduced earning capacity. You’re trapped in this impossible cycle where losing your health means losing your financial stability, but you need financial stability to maintain your health.

All while still trying to be a daughter, a sister, a friend, a partner. Both because these relationships matter to us and because, frankly, we can’t survive this completely alone — even though that’s exactly how it feels most of the time.

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Choosing Myself

As hard as it all is, in order to survive and come out the other side, I had to make the most difficult choice of my adult life: I had to choose myself.

Even if that meant letting go of a stable, well-paying job where I was excelling professionally that gave me financial freedom. Even if it meant saying goodbye to the European dream life I’d worked so hard to build, leaving behind the chosen family and community of friends I’d created from scratch in a foreign country. Even if it meant using my savings — money I’d carefully set aside for future dreams — to pay for treatments and recovery instead.

Because while three years ago what I needed was to prove to myself and the world that I could make my lifelong dream of living in Europe come true despite chronic illnesses, now what I need is entirely different. Now I need to give myself the energy and time to simply rest, to fight for my health and recovery without the pressure of maintaining a career, without the exhaustion of constantly proving my worth through achievement.

Even if that means crushing my ambitious, overachiever side — the part of me that’s been my driving force but has also been slowly killing me.

Three years ago, choosing myself meant moving to Estonia. Today, choosing myself means coming home.

But this isn’t a story about giving up — it’s about evolving. About becoming a better, stronger version of myself who’s finally learned to honor my body’s signals instead of override them. About discovering that true achievement isn’t about pushing through at any cost, but about having the wisdom to know when to push and when to rest. About learning that my worth isn’t tied to my productivity, and that sometimes the most courageous thing you can do is disappoint others’ expectations to save yourself.

Maybe the next chapter will be about finding ways to thrive that don’t require me to sacrifice my health on the altar of ambition. Maybe it’s about redefining what thriving looks like when you’re living with chronic illness. Maybe it’s about showing other overachievers that it’s okay to hit pause, to choose healing over hustling.

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If you’re reading this and living with chronic illness — you’re not alone in this fight. Your worth isn’t measured by how much you can endure or achieve despite your illness. And if you’re reading this as someone who loves someone with chronic illness — this is what goes on behind the scenes when we say “I’m fine” but look a little tired.

The battle is real. The exhaustion is real. And so is our strength — especially when we finally give ourselves permission to use it differently.

lots of love from the better healthier version i’m becoming,

Chiara Lionel Salim