I don’t talk about being sick & that’s why you don’t get it.
I refuse to make illness my identity. The side effect is that people have no idea what it costs me to function.
There’s something frustrating about being chronically ill when you refuse to look like it.
A lot of people turn their disease into a personality. I saw someone with what was probably dysautonomia (i.e. malfunction of the nervous system). On bad days, walking exhausted her, so she used a wheelchair. Then she posted about how hard wheelchair life is… for TikTok clout.
She was complaining instead of trying to get better. My reaction was: get offline and focus on healing yourself.
It was the same pattern during COVID. People with long COVID who made it their whole self: one-dimensional, always the disease, no attempt to get better, no belief that anything could change.
I do the opposite. I’m trying to heal and have a life that’s as happy as it can be with this thing in it. So I minimize my illness and don’t talk enough about it.
And because I don’t talk about it and explain it, people don’t understand how it really is like.
I think I’ve finally healed the worst of it. It took 15 years. And with the hindsight, I now understand how to talk about it better.
Why am I writing this now?
Someone I was working with on a side project recently said: “just spend one hour on it, I’m only asking for an hour.”
I didn’t have one hour.
One hour of focused thinking on a complex problem has been a pretty difficult challenge for me due to my health.
Until very recently, I had around 10 of these hours a week. Paid work was filling all that time.
And yes I shouldn’t take side projects in that state, but I say yes usually in a period where I feel better but sadly it never lasted until now.
What exactly is my disease?
For years I couldn’t describe what I was going through. I had a lot of symptoms, but I couldn’t put them together. I had a lot of pain, fatigue, brain fog, but I couldn’t find a reason for it.
It started as a mix of high stress that became burnout, a probable viral infection, and food poisoning to put the final nail in the coffin. My gut got wrecked but I didn’t realize it.
The closest label I finally found to describe my condition was chronic fatigue syndrome. Say that out loud and people hear: sleep more, exercise more, it’s just a small disease. Most doctors don’t even recognize it and there’s no single word that makes someone go: “oh, that’s serious.”
That’s the core problem, no usable name. Even people who know I’m sick underestimate how sick I am.
If I say gut issues, they say they get those too. A bad burrito. They’re out for a day, they shit, and they’re good again.
Why gut issues are worse than they sound
Chronic gut issues are one of the worst things you can have, because nobody knows how to treat them.
Diabetes is understood.
Cancer is hell, but doctors have protocols.
Gut problems can have multiple root causes at once. You see a specialist and they still don’t know what you have.
One of the biggest pieces for me is low stomach acid. Most doctors don’t believe that’s a thing. You show up with acid reflux and they prescribe antacids. Most of the time the problem is too little acid and antacids make it worse. Tests are unreliable and if they find something, the protocol is usually temporary.
When your gut is that broken, everything you eat poisons you: fiber, carbs, protein, fat. Everything!
Anything that isn’t broken down by stomach acid feeds bacteria and pathogens.
They produce toxins.
Your gut lining gets thinner.
Those toxins leak into the blood.
Your whole body stays in a constant state of inflammation.
Inflammation doesn’t stay in the gut
A debilitating pain in my right shoulder and arm went away when I healed one of my chronic gut issues. I had blurry vision and night blindness, they’re gone now.
In an inflammatory state, you lose muscle. Because of that my jaw is now misaligned and I can’t chew properly anymore. That usually happens in your 60s, but it happened to me in my 20s.
Still! You could function through most of that though.
The part that actually takes your life
Brain fog is something people are starting to understand. You can’t think clearly, you try to focus and the thoughts don’t arrive. You can’t get them in order. That’s why I had to quit programming. Development needs hours of holding a lot of moving pieces in your head. With brain fog you lose this ability.
But it’s not just brain fog. Memory loss, neurotransmitters, sleep, all of that is a problem.
I forgot a lot of my best memories. The brain dumps what it doesn’t need so it can keep you alive. Inflammation burns through nutrients and neurotransmitters. Not enough dopamine, not enough adrenaline, not enough of anything. You’re flat all day, every day.
I don’t have energy. I have a budget.
Before I started to get better, I would wake up (after sleeping for 12 hours), eat, run errands, and have to take a nap for 2 hours. Rinse and repeat all day.
At my worst, I also had migraines multiple times a week and walking more than a few thousands steps would leave me in bed for 24 hours.
There’s actually something called “pacing” for chronic fatigue syndrome sufferers. It’s a way to manage your energy and not overdo it because the common advice of “exercise more” to get better is actually harming you. Yet I tried to force myself to go to the gym 5 times a week at some point and it made everything worse.
It was my daily life for years.
I still won’t make my disease my identity
Thankfully most of what I just described is gone.
And this time for good. I’m not completely healed, but I’m healed enough to be able to work full time and have a normal social life again.
I wrote this because “it’s just one hour” and “it’s just a small disease” are the sentences I keep hearing from people and I don’t have a 30-second explanation for why they’re wrong.
You won’t see me on TikTok complaining about how hard it is to live with this disease. I’m not going to make it my identity.
I want to have a hero’s journey. I want to be the guy who didn’t give up, healed himself and became a better person because of it.
That’s what great stories are made of. And I want mine to be a success story, not a pity party.