When Getting a Diagnosis Means Realizing Your Condition Is Lifelong

A few months ago, after five years of struggling, I was finally diagnosed with Ehlers-Danlos syndrome and postural orthostatic tachycardia syndrome (POTS) on top of my current diagnoses of fibromyalgia, allodynia and peripheral neuropathy. It took years of fighting, years of being called “crazy” and an “attention-seeker.” It took days upon days of having to research and advocate for the condition which I knew I had despite constantly being told my doctors I did not.

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

My lack of proper diagnoses for the past five years has made everything much more difficult than it had to be. Whether that be trying to apply for a scribe to sit exams due to dislocating shoulders, or having to explain and talk through my symptoms with all the ER doctors who repeatedly told me “it doesn’t make sense.” Nothing can compare to the frustration and disappointment that is hearing yet another doctor dismiss you because it’s “all in your head” and “you will get better if you see a psychologist.” I have lost count of the number of times I have heard someone tell me my subluxations and dislocations aren’t real and I just imagine them. (I mean, how do you even imagine your joints falling apart?)

 

It also led me to feel very lost. I found it difficult to explain any new symptoms to doctors as I would find myself being told it was nothing. Hence, I did not treat my body with the love it deserved as I myself began to downplay all I was going through. I even began to lose faith in myself.

So I always held onto the hope that getting a diagnosis would make everything better. And it did at first. The moment the geneticist said the words “you have Ehlers-Danlos syndrome” I was filled this overwhelming sense of relief. Finally, everything – all the pain, all the symptoms, all the suffering – made sense. I cried for joy. I felt validated and I felt for the first time that people would truly understand me.

But then you leave the geneticist’s office and the reality sinks in.

The first thing I struggled with was the risk of being immobile by the time I’m 50. As a 17-year-old, I have never truly had to think that far ahead. My sole focus has been getting through school and going one day at a time. But all of a sudden, I was forced to look at what my life might be like and, while I know being in a wheelchair is far from the worst thing that could happen, the thought of this hit me like a truck.

Then the cardiac aspect of my illness affected me. Then the idea of having children. And I began to crumble under the thought of my future once again.

Eventually I came to terms with all this but then something more painful occurred to me: I may not ever get better.

Before my diagnosis, I was always told my condition would continue to improve the older I got and that all my injuries were simply because I was growing. I was also “always badly injured,” not chronically ill.

But now, that’s what I am. I am chronically ill and I will face many obstacles with my health for the rest of my life. And I have found this by far the hardest thing to accept. I had always accepted my pain and everything I was going through, but I think a part of me was always coping because I believed this would go away.

So now I have to truly accept my illness for what it is. It is lifelong and it is a battle I will probably face every day for the rest of my life. But I also know I will survive and I will be OK.

Maybe it’s a blessing, maybe a curse – who knows? But I guess I have the rest of my life to figure that out.

Thinkstock photo via artant.