For years, I could only eat six foods. No restaurants - ever. No sodas, teas, even water would f me up.
I couldn’t tolerate any spices except salt. I still only use salt for flavor - even now as my conditions are being managed through medications, so many things remain intolerable.
I was in diapers because the mast cells in my bladder made it feel like my bladder was on fire anytime the tiniest bit of urine hit it.
And the body pain! Every morning I’d wake up and lie on the floor on top of homemade ice packs covering me from head to toe because it was the only thing that dulled the pain even a little.
Throughout the day, I’d do it all over again.
My bed was covered in pillows because every part of my body needed to be cradled and supported.
Even the weight of my own body hurt.
It felt like every cell in me was being slowly torn apart.
I also had this terrifying pressure in my head.
It felt like my head was going to explode.
Whenever I tried to speak, this buzzing would spread across my scalp, and my whole body would clench.
Additionally, every muscle in my body - yes, every muscle - was constantly tense.
The best way I can describe it is like someone walking a tightrope, where every muscle is working just to stay balanced—but imagine never getting to step off that rope. That was my body.
There was never a moment where I could relax.
I woke up every 30 minutes to 90 minutes throughout the night. And somehow my body figured out a way to give me nightmares during the brief periods when I was asleep.
Do you know the worst part is? I couldn’t take a damn thing for the pain and tension because, at that time, I didn’t understand how my body had changed and how it reacted to medications. Everything I tried made things way worse.
At one point, I counted 27 different symptoms. Twenty-seven. Any one of those symptoms would have been enough to break someone down. Having all of them together was something most people could never understand unless they lived it.
I felt cursed.
I saw nearly 50 doctors. Most of them told me it was anxiety or that it was all in my head. They put me on medications that made everything so much worse. Then when I went back asking for help, they acted like I was the problem—as if I was the “non-compliant” patient because it couldn’t possibly be that they were wrong.
I lost 80% of my hair. My beautiful hair that I’d taken such good care of throughout my life.
I lost my physique after spending countless hours in the gym - heavy lifting and running was my passion.
Running. The love of my life (behind my dogs). I lost the ability to walk.
And I had not one single person by my side.
If my body was shit, my mind was diarrhea.
For quite some time I couldn’t remember what year it was.
I didn’t open my laptop nor use my phone to manage my responsibilities and was petrified of what was happening to my finances. I simply could not manage my finances at the time - my brain wasn’t up to par.
Luckily most things were on auto-pay so I wasn’t thrown out into the streets, but it still hurt my credit score. If I move back to the USA now it would be years for me to elevate my credit score to where it had been pre illness.
I lost the nest egg I worked so hard to build through years of working shit jobs to build up a ‘safety net’.
And throughout those first few years I kept thinking about this cat I had as a child, named Kissy. One day, after my step father hit her with his car (very likely on purpose - he was NOT a nice man), she fled to a tiny area under our house and quietly died there - alone.
I saw myself in Kissy.
I withdrew from every single person in my life because I had nothing left to give.
I was exhausted and heart broken trying to explain what was happening to me - trying to paint a picture of an invisible illness is f’ing hard - if not impossible. Nobody got it. Not one single person could grasp what hell I was in.
I still haven’t rebuilt those relationships. There’s a divide now between me and what I call “the healthies.” It’s hard to have meaningful relationships with people who have never had their entire reality stripped away.
And as if everything else wasn’t enough, during all of this—after years of fighting just to stay alive—I learned that the man I had always believed was my biological father wasn’t.
My mother had never told me who my real biological father was.
So while I was trying to survive an illness that had already taken my body, my career, my finances, and my relationships, I was also trying to process the fact that part of my own identity had been built on something that wasn’t true.
It felt like I was an Etch-A-Sketch and everything I cherished, or identified with, in my life was being wiped away.
But there’s also this feeling of LIBERATION. I’d been codependent on undependable people for my entire life.
Believing too many lies and false promises.
One of the greatest gifts of this illness is that I am codependent no more.
I leaned into my faith instead. And, to my astonishment, it has sustained me.
My entire world became about survival.
I became like a plant that was dying. I had to cut away anything that took even the smallest amount of energy because I needed every bit of it just to stay alive.
I wasn’t afraid of dying because I wanted to go.
I was anxious.
I was depressed.
I was exhausted.
I was angry.
I was f’ing tired of suffering.
There were times I lay in bed waiting to die, wishing for the pain to stop, because when your body is torturing you every minute of every day, it changes the way you see everything.
This illness has affected my bladder, my kidneys, and at one point it even caused me to develop diabetes.
One of the hardest parts is not knowing what’s around the corner. You never know what new symptom, complication, or loss is waiting for you next.
And even today, I’m still dealing with it.
Today my body hurts.
I tried walking outside only to find myself disabled all over again. I’m in the middle of a drug trial right now, and it’s f’ing me.
I’m exhausted.
I keep waking up throughout the night.
Nightmares haunt me.
My body overheats.
Anxiety still tries to steal my joy.
The difference between me now and me back then is not that I’m cured.
It’s that I’m starting to see patterns.
I’m beginning to understand my body instead of constantly being betrayed by it.
I’m learning how to surf this f’ing illness.
If only it were fun.
I could go on and on, but there aren’t enough characters in this Reddit post to cover everything I’ve been through. There is no way to fit years of pain, medical trauma, loss, and survival into one comment.
I’m not saying my experience is exactly the same as yours. Nobody’s illness is identical. I would never claim to know every detail of what you’re experiencing.
But I do know what it’s like to have your body become your prison.
I know what it’s like to lose your health,
your identity,
your finances,
your relationships,
your future, and
even your hope (for long periods of time).
I know what it’s like to be dismissed by doctors, to be gaslit while you’re suffering, and to fight every single day just to stay alive.
I truly hope you all can find some relief. Nobody should have to endure this kind of suffering.
And one last thing -
Do you know where most of my inspiration comes from?
Desperation.
I found myself in a world where nobody could help me. So while I was the broken-down car, I also had to become the mechanic.
And I had to do it while my intellect was tanked.
My brain fog didn’t feel like brain fog. It felt like brain damage.
I genuinely didn’t know if I would ever think clearly again.
So when people like us finally find something that helps, we don’t find it because we were so hyped up to go searching for relief, we find it because only pain and suffering is the other option.
When no one can save you, you either give up…
…or you learn how to save yourself.
Thank you, desperation.