How The Mighty Helped Me Find My Elusive Diagnosis

I am a fighter. I’m a bonafide, medal winning, butt (or rather, head) kicking fighter. It’s been awhile since I’ve stepped into a ring or competed seriously, but I still remember. It’s who I am.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

I am the type of fighter who likes to know my opponent. I want to know if my opponent is bigger than me so I can be faster. I want to know if they’re faster than me so I can hit harder. I don’t enter the ring unprepared. So how do I fight an opponent I can’t see? One that seems to make no sense and fights with no rhyme or reason?

I have always had health issues, and I have always been a complicated case. No one had answers. Pain and stumbles were brushed aside as “growing pains.” Feelings of lightheadedness were dismissed with “eat more salt.” Then in high school I developed gastroparesis.

I was sent to a GI doctor who was determined to find an answer. As we brought the gastroparesis under control, my other GI symptoms and joint pain seemed to worsen. This, plus a significant family history, led my doctor to look for Crohn’s disease. Eventually I received my diagnosis. The gastroparesis was put on the back burner. I was told it was idiopathic and that was the end of it.

As I got older though, I still had symptoms with unexplained pain. I felt the familiar feeling of doubt creeping in. “What if I don’t have Crohn’s disease? What if it’s all in my head?” I have good doctors who take me seriously and my family and friends are always supportive, but the doubt was still there. I had gotten to the point where I stopped expecting answers for my issues that seemed to have nothing to do with Crohn’s disease.

Recently, I saw an article The Mighty shared about Jameela Jamil’s struggle with hEDS. I love her on “The Good Place,” so I read the article. As I was reading I started to think, “those things sound very familiar to me.” The pictures included with the article really struck me. I started doing some tentative research on Ehlers-Danlos syndrome and a lightbulb went off. Everything was right there in front of me, and I could see it in my family members as well. I started on a path for answers.

After years of “I’m sorry, we don’t know,” I received my diagnosis relatively quickly. I got the “there’s no cure or specific treatment for Ehlers-Danlos syndrome” talk, but I didn’t care. The only thing going through my head was, “I have an answer! We know the whole story! It’s not in my head!” Someone finally took the time to look at my history as a whole: the GI issues (not related to Crohn’s), sprained ankles, back problems, everything. Now I can see my opponent.

If you feel like you’re shouting into a void and no one is listening, know that’s not true. Because of the writers on this blog and an outspoken celebrity, I can look my opponent in the face and fight. Thank you.