My Diagnosis

The Facts

The History/The Symptoms

When I was around 20, I was in college and shared an apartment with a couple close friends. We did not live a healthy lifestyle. Workouts were occasional at best, our free time was couch-based in the form of binging TV or playing video games, and we ate garbage.

Around this time, my back and hips starting getting tight and painful. Doctors were at loss or dismissive. I went about my life and after college back to working out more and eventually to eating healthier.

Symptoms never went away, no matter how hard I worked. Sometimes they would lessen, sometimes they would worsen. But they were always there. I knew I’d screwed my body up in college and that I didn’t have the self discipline necessary to fix it.

Then, a few weeks before our baby was born, I got a very bad case of iritis. A moderately lit room or sunlight through my eyelids would cause excruciating pain. Luckily, it was very responsive to steroid eye drops, but would come back as I tapered off.

What was going on?

The Diagnosis

As it turns out, my incredible wife found an autoimmune disease online. The primary summary she found was that it presented in males in their 20s with back pain and iritis. That’s pretty on the nose (and as we later found out, not actually accurate in all cases, although it was for me.)

A month or so later, we’re at our friends’ wedding, and it turns out his older brother is a rheumatologist. Long story short, we got some X-rays and blood work and scheduled an appointment with him. Sure enough, I have ankylosing spondylitis.

That translates to fusing inflamed spine”, which is a very succinct summary. Soft tissues around my spine are inflamed and slowly ossifying; left unchecked, my spine could fuse solid.

The Future

I got lucky. It appears that so far, most of my spine hasn’t fused, and just my sacroiliac joints have sustained permanent damage. But my lumbar spine has straightened out, compressed, and the vertebrae have started growing towards one another. I haven’t yet started drugs and don’t know how much they’ll be able to help me. We’re optimistic that there is a path to remission, but even if we’re right there will be rules I have to follow:

  • I will be in pain and feel stiff, especially in the mornings
  • I will be fatigued
  • There will be good days and bad days.
  • Every single thing will be harder. I have to fight extra hard just to be normal.

But luckily, in addition to drugs, there is a well known playbook I can use to keep or gain ground:

  • Eat a low-inflammation diet
    • No sugar
    • Limit red meat, dairy, and gluten
    • Eat lots of nuts, leafy plants, fruit, whole grains, fish, good fats
  • Keep moving
    • Workout and stretch first thing in the morning
    • Don’t sit for more than 15 minutes if I can help it
    • Workout hard at full range of motion. Use it or lose it.
  • Keep good posture

The Feels

As I’m sure you can imagine, getting the diagnosis unleashed a lot of feelings.

Remember how I said that I knew it was my fault? I was wrong. I had been certain that I was ruining something great and not good” enough to fix it. Turns out I’d actually been doing really well. So I decided that I’d already spent a decade feeling bad about myself, I wouldn’t waste a single minute feeling bad for myself.

In that decade I kept the worst symptoms at bay without know what I was fighting. I inadvertently showed how hard I am by not going easy on myself and striving to get back to normal”.

Going forward, I will accept no pity. I will not view ankylosing spondylitis as a curse. I will not let it destroy me.

This is my opportunity to show my true quality. To show that I can live a normal life despite the pain and fatigue? No.  To show that I can live a better than normal life and be stronger because of the pain and fatigue. It is a blessing, and it will save me.

It already has. Those years spent fighting aimlessly prepared me for this. They taught me the basics of training and nutrition. They taught me how to endure and how to push. They taught me how to form habits and remake who I am. I just couldn’t see it until I got a different perspective.

Every body has their own battle in life. They’re all different, and there’s no way we can truly understand what another person is going through. But we all have the same choice with our battle.

Will this destroy me, or will it remake me?

Will this be my damnation or my salvation?

My curse or my boon?

My obstacle or my opportunity?

With a chronic illness like AS, I have to make that choice every morning. My alarm goes off, the sunlight streams into the room, and I wake to stiffness, fatigue, pain. And I decide again.

That’s why I’m going to get it inked into my skin. This disease is my past, present, and future. And I can’t afford to forget it.

Last things last
By the grace of the fire and the flames
You’re the face of the future, the blood in my veins, oh-ooh

You break me down, you build me up, believer

Believer by Imagine Dragons

June 20, 2022