I was diagnosed with an autoimmune disease. Now what?

The beginning of this story is pretty simple — and a little ironic: my unofficial medical degree came the same day I was diagnosed with ankylosing spondylitis. Since then, I’ve become a full-time student of my own body, specializing in rheumatology by necessity. After all, who else is going to figure out which symptoms come from my primary disease and which are just fibromyalgia tagging along?

I’m fairly sure my dad and paternal grandmother have the same condition. They show some of the classic symptoms. But they refuse to see doctors, and I’ve made peace with the fact that in my family, any genetic disease only comes to light once it starts yelling — because nobody listens to the whispers.

The problem is, those whispers matter. Symptoms start so small you don’t even register them. One of the first questions I was asked was, “Do you feel pain in the soles of your feet when you wake up?” It caught me off guard. I’d always felt that — thought it was normal, just from sitting or lying down too long. But my doctor guessed it right just by looking at my scans. And he was right. Finding him, though? That was a whole journey.

I’m almost certain my autoimmune disease was triggered by a traumatic case of medical negligence.

I’d had tailbone pain for a while and finally decided to investigate it properly. I went to see a rheumatologist in Copacabana. That weekend, I’d started feeling stiffness and pain around my tailbone. And what did this so-called specialist do? She didn’t touch me. No physical exam, no imaging, nothing. She noticed I had a psychiatrist appointment the next day and casually suggested I was “probably imagining things.”Honestly? The only thing I was imagining at that point were very creative insults for this pseudodoctor.

By the end of the week, I was on antibiotics and had an open wound near the base of my spine. Turns out, I had a pilonidal cyst starting to flare up — something she completely missed because she didn’t bother to look. So, to the negligent doctor who dismissed me: I now owe a R$20,000 bill for the first five doses of the medication I needed to treat my ankylosing spondylitis. (Disclaimer: my health insurance covered it, but deep down I still think you should pay.)

After that lovely trauma, I searched for new doctors — and found a second home at CREB, the Center for Rheumatology, Orthopedics, and Physical Therapy. The doctors there did something revolutionary: they listened. They performed physical exams. They reviewed my history. They ordered proper tests. In short, they chose to care.

It was hard to believe — after so much dismissal — that there were people who didn’t ignore what you said about your own body. People who trusted that you knew yourself.

So here I am now, trying out a second medication for the ankylosing spondylitis, and one more for the fibromyalgia. It’s exhausting, juggling all the pills and side effects, but at least this time, I’m not doing it alone. Someone is helping me.