Diagnosis Update: Plot Twist

For the first time in the year and a half since I first got “sick,” I finally feel like I am making some progress to my diagnosis. Last week I was able to see an orthopedist in my area with years of experience treating individuals with connective tissue differences such as Ehlers Danlos syndrome (which I suspect I may have).

To have a doctor who is knowledgeable about my potential diagnoses rather than Googling them as I mention them–yes, this actually happened at the last doctor I went to–was going to be great! In spite of the exciting prospect of seeing an expert in EDS, however, I tried to keep my expectations mild in preparation for this appointment . I had been disappointed by the result of every other doctor’s visit I had done, so sadly the odds were that this one would turn out badly as well.

In being evaluated for Ehlers Danlos syndrome, the orthopedist (let’s call him Dr. O), requested a pelvic x-ray. The nurse I spoke to on the phone was shocked that someone with my symptoms had never had an x-ray done of any problem areas. Hoping it would shed some light onto my condition, I got the x-ray done and brought it to Dr. O’s office in a giant white envelope.

The x-ray did, in fact, change everything.

The appointment went great. It seems I had found the type of doctor I was looking for. I actually received help that day, which was a new experience! I barely used the pages of notes I bring to every doctor’s appointment; for once my physician asked the questions, tested different parts of my body, and led the discussion. Before putting the x-ray up on the wall Dr. O told me it was obvious I had a connective tissue difference: either Ehlers Danlos or something similar. He also agreed that I likely had dysautonomia, although my cardiologist (who I see next week!) would be better equipped to diagnose me.

Pointing to the x-ray, Dr. O also told me I also had arthritis in the SI joint.

Instantly, my head started spinning. A lot of thoughts and emotions swirled at once. Normally I am prepared for any potential diagnosis, because I’ve already thought of it myself, but I had never seriously thought I had arthritis. This potential diagnosis completely blindsided me. I had already grieved for a long time and accepted the fact that I probably had EDS and dysautonomia. Now I had to come to terms with the fact that I likely had EDS, dysautonomia, AND arthritis.

Part of me felt just like I had when I first got sick: grief-stricken, confused, lost.

As Dr. O talked about the abnormalities in my x-ray, another fact–something equal parts wonderful and horrible–gave me chills. After a year and a half of suffering with no answers I was sitting in a doctor’s office, and he was pointing out visible signs of my pain. Even an untrained eye like mine could see the deterioration of my joints on the x-ray. After the better part of two years spent hearing people tell me my pain was all in my head, here was concrete, definitive, scientifically verifiable proof that it wasn’t. This is horrible because it means that no amount of drugs, therapy, or positive self talk can ever wash it away. But it also means that I’m not crazy, and that’s worth everything.

After that, Dr. O sent me away for a battery of blood tests looking for conditions like rheumatoid arthritis, chronic lyme disease, lupus, and many more. I’ll probably know a lot more about myself and my potential path forward when they come back. (Side note: I actually blacked out while they were doing the first set of blood draws — if you are prone to fainting from blood loss please have them lay you down for the blood draw!)

In the meantime I feel like I finally have made progress, and that’s a type of hope I’ve never experienced before. But I’m also grieving again, coming to terms with another painful chronic illness I’ll now have to fight. But it’s alright because soon, hopefully, I’ll finally know for sure what I’m fighting.

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