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Lessons from the Specialist

I saw a specialist for my chronic illness last week (hypermobile ehlers-danlos syndrome). I was on the waitlist for almost a year to get this appointment, so I was very excited to see what his recommendations were for my care.


Two hours later, I left the appointment in tears. Here's why.


I had read a lot about this man, and for some reason, I thought he would recommend some new therapy, medication, or some breakthrough therapy to help me from degenerating, from being in more pain... Or at least to stop from getting worse. I brought my mother along to help me recall my medical history (in the moment of an appointment, I feel like you always need backup from the accosting questions!)


What I got was not what I expected. After the back-and-forth of my medical history, medications, etc. He told me everything I was already doing was correct, there were no breakthrough therapies, no new treatment for my condition or my pain. He had a few recommendations, a few tweaks, a few changes here and there. All in all, I was doing a good job; stick to the physical therapy, try to get off of opioids, try layering Tylanol and Advil in a regular schedule (instead of as-needed. Easier said than done, but of course I'll do my best.) He said I needed to see an immunologist for a primary immunodeficiency but couldn't give me a referral (gee, thanks).


One comment he made to me really hit hard. While we were discussing physical therapy, he said "Physical Therapy is extremely important to stick with on a regular basis - it takes a year of constant PT, 5 times a week, to stop getting worse."


I left the appointment on the brink of tears, knowing how long I had gone unknowingly getting worse; that there was such a simple solution out there that no-one had told me. I could have stopped the progression of my joint deterioration a year ago, If only someone had sent me here sooner.


For all of you out there whose doctors say a diagnosis won't help you, they're wrong. I never would have known how to stop getting worse if I hadn't seen a specialist for my specific chronic condition, and if I had been diagnosed earlier in my life, who nows how much better shape I would be in today. What if my pediatrician, who refused to send me to Hopkins to investigate my strange bruising and pains ("it's probably nothing!"), had sent me to get a full workup? How much better would I be today? What if I wasn't in constant pain, if I didn't have herniated disks, or muscle spasms over my whole body? If I didn't need FMLA to take off of work for incapacitation? Imagine if I had been strengthening my body since I was a child - I bet I wouldn't be in this condition today.


I left the appointment on the brink of tears, knowing how long I had gone unknowingly getting worse; that there was such a simple solution out there that no-one had told me for 24 years. I sat thinking on the car ride home, about an alternate reality where I was in therapy as a child, and could run and play as an adult because the medical system had done me justice. I thought of what could have been, and mourned.

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