My Doctors Told Me I Was Anorexic... Because They Couldn't Find Anything Wrong with Me

I was always a picky eater. I remember because my mom would never let it go. I've always had a hard time eating new foods, but now we know most of it was because of my many food aversions, mostly due to being autistic, but also because ever since I could remember, eating hurt.

Everything hurt. Everything went down rough. I remember being a little kid and screaming my head off, not wanting or being able to sleep because my stomach hurt so much.

Years went by, and nothing changed. I had no idea that this wasn't normal. I had no idea how much pain I was *actually* in. I thought it was just normal, that it was how everyone felt, and that I had to deal with it and not talk about it, just like everyone else. Now I know that almost no one felt the way I did.

I could never explain how it felt, because for me it was so constant, I had nothing to compare it to. It almost felt comfortable sometimes. There was always pain. I thought that's what everyone dealt with for so long. My blood tests always ran normal. My scans and tests and endoscopies looked fine. But then I went to college and things got so much worse.

I saw it happening over the years. Ever since I started high school, I could feel my body slowly having a harder and harder time. It was still brushed over as simple things that would "work themselves out eventually."

In reality, I had lived with a chronic stomach infection known as small intestinal bacterial overgrowth, or SIBO, for most of my life.

It was diagnosed by a simple hydrogen breath test at the age of 19.

In the summer of 2014, my health began to decline sharply. Things I used to be able to do with ease suddenly became impossible. Books that I used to read cover to cover now sat untouched on my bookshelves because I didn't have enough energy to focus long enough to even read a whole paragraph. Showers were missed, clothes went unwashed, and nearly everything I ate was thrown back up. Classes that I used to think were endlessly engaging, I could now barely attend. My entire life was shut down, all because I couldn't eat properly.

I saw at least six different doctors at several hospitals prior to my diagnosis, though none thought to prescribe this test. Instead, they all came to the conclusion that I was "medically anorexic" and that "the only relief I may get is from talk therapy to alleviate my psychological symptoms."

This was all bullshit.

All I wanted to do was eat, and I've never once in my life wanted to be skinner than I already was, or actually ever wanted to eat less.

I was just in so much pain all the time. I couldn't keep even simple foods down, and I was constantly dry heaving from the pain. I could barely walk by the time I started really looking for an explanation. I had lost 35 pounds in less than a year and couldn't seem to hold on to any nutrients. My skin and hair and nails told me so. I was entirely incapable of absorbing anything, and was slowly starving to death as everything I ate was instead eaten by bacteria.

I don't know how many tests I did before the hydrogen breath test, but that one was by far the easiest.

The other doctors ordered MRI's, endoscopies, colonoscopies, gastric emptying studies (a test which requires you to eat radioactive eggs... I'm not joking) and a whole host of other severely invasive and physically demanding tests.

But none of those tests ever came up with anything wrong and the doctors believed them. And so because of that, everything was my brain's fault. But the truth was that it wasn't my fault. My pain was real and caused by a pretty serious condition, which could lead to even more severe issues if left untreated. The other doctors were happy to watch me walk away in pain believing that it was all in my head. It wasn't until I finally saw a doctor who believed that I didn't want this, that my brain wasn't the problem, that someone actually spent the time and energy to figure out how to best help me.

I like to think of this as a lesson for undiagnosed or misdiagnosed stomach issues, or really any medical issue that has gone undiagnosed. Follow your gut and your heart. If you know there is something wrong, you are probably right. You don't always have to stay with the same doctor, or even within the same center (unless your insurance requires this). Finding a second, third, fourth, fifth, or even sixth opinion may be the one that could lead you to a proper diagnosis and real care. Don't give up, don't let someone tell you they know your body better, and don't just accept an "easy" diagnosis, especially if you know it is wrong.