The Magic and Joy in Being Diagnosed With An Autoimmune Disorder
Updated: Oct 5, 2020
**If you don't feel like reading, scroll down to the bottom of this page for a link to a video version of this article. Three years ago in June, I was diagnosed with Behcet’s Syndrome. It’s a funny sort of thing to be diagnosed with because the only way to truly figure out if someone has it is to eliminate every other option that the symptoms could come from. I think that’s why I spent about 30 years going to doctors just to have them tell me that stress was the cause of all of my health problems.
That’s right- stress. As a 12 year old having my first endoscopy, the answer was stress. As a 31 year old having another endoscopy, the answer was still stress. Through colonoscopies, multiple surgeries, arthritis, eye therapy, ultrasounds, hospitalizations- there was no clear answer, and so the answer was always the same. It has to be caused by stress.
I won’t lie. My life hasn’t been stress free. In fact, even as a child I would have called my life stressful. But I definitely don’t think it was stressful enough to cause me the health problems I was having. The intense pain in my stomach, the never-ending nausea, the headaches, the body pains, the sores in my mouth.
The body is a mysterious thing, but telling a child that stress has caused all her health issues causes more harm than good. Making a child feel as though her emotions are manifesting in physical symptoms is traumatic… at least it was for me. If I wasn’t stressed out enough before, I certainly became so each time another doctor would diagnose me that way.
After years of searching for answers, I finally decided to go to a rheumatologist. I figured at the very least I could find out why my surgeons found level 4 arthritis in my knee and hips when I had surgery 10 years prior. So I found someone covered by my health insurance and made an appointment. That was the day my life changed.
I walked into Dr. Petryna’s office prepared to hear the same things I had heard over and over again. I walked in certain that I would leave with more tests to take, more scans to have, and more questions than answers.
But that’s not what happened. Instead, she figured it out. I barely remember the sequence of events it happened so quickly. I told her about my arthritis. I told her about my stomach and intestinal issues. At some point she asked me if I was flexible. I said I had double-jointed hands. She asked me to bend down and touch my toes and I flopped over like a rag doll. She asked me if I ever got sores in my mouth and I couldn’t for the life of me figure out how she knew. She asked me if I had any issues with my eyes and I told her about my double vision and my vertigo-induced dizzy spells. It was as though she knew all of my health issues before I even mentioned them.
In my 10 minute consultation, something miraculous happened. She narrowed it down to three precise disorders and tested me for them.
I cried from joy. I’m crying now even as I write about it. After decades of feeling like a lunatic, I finally found someone who understood and who was going to do something to help me. And she never once used the word stress.