Before that point in time, I was constantly told it was MY FAULT that I felt sick. I was responsible for how I felt. On my bad days I was told I was inconveniencing even my closest friends. Many of them decided being my friend wasn't their cup of tea. I got really depressed. "Why me?" was consistent throughout my day. People told me it was all in my head. Many thought I was faking it since no doctor could find anything wrong with me. The funny thing is some people still think I'm faking but that's another story for another time.
Last July, I walked into the genetisists office with low self esteem, anxiety, and very depressed. I underwent the testing. They poke you and praud you. By then, I was used to doing testing. I mean they'd tested me for just about everything else in the book. Brain tumors, blood clots, fibromyalgia, and even some rare diseases that scared the crud out of me and still do. The genetisist had a file (mind you it was in a 2" binder) that contained every piece of medical history we could get ahold of. From ER visits to school nurse documentation to my dentist X-rays. We spent several hours going through it together (me, my parents, the geneticist, and several of his students that were observing my case). Then it was time for the Brighton Scale. They had me bend over to touch the floor, extend all my limbs, asked me which joints I could pop and how, and messed with my fingers, spine, and jaw. Since he had students in the room, my geneticist verbally pointed out some "ideal EDS characteristics" and my heart sank... After the physical exam was done, he looked us straight in the face and said "You have Ehlers Danlos Syndrome, no doubt about it".
After that moment, I was flooded with emotions. i think I can recall crying in his office actually. We had done all the research on Ehlers Danlos Syndrome already so I knew exactly what this diagnosis meant. I would spend my life slowly degenerating my tissues. I would be in pain most if not all of my life. I risked dislocations, Skin tearing, muscle spasms, organ rupture... I have a 50% chance of passing it on to my children... I have POTS and my autonomic system is weak. Hardly anyone knows what I'm talking about when I mention my disease. I knew what I had to expect.
I spent the next 2 days when we got home in my room. I cried myself to sleep at night. I hardly moved. I didn't talk to the few friends that had stuck by me. My parents were worried I was becoming more depressed with the circumstances. Then, I snapped out of it. I accepted my fate. I mean, EDS was tossed around as an idea for about a year before I got the diagnosis so it's not like it was a surprise... I just needed time to let it sink in. A bit of a pity-party. And that's OKAY. It's necessary to deal with it. And I did.
So you may be wondering why this post is titled "Why Diagnosis is SO Important" if I'm talking about crying and being depressed. Well, after those 2 days, everything changed.
I finally had a Diagnosis. I knew exactly what was wrong with me. Scary symptoms like loose joints and muscle spasms were explained. I was no longer scared or jumpy at my condition as it evolved. I could do research. I knew the risks and how to help myself avoid symptoms when possible and especially I knew what to do when they occurred. I wasn't scared that I was dying. I wasn't scared that by being in pain there was serious internal damage. I wasn't scared that my heart wasn't working right when I had chest pains. I got the proper medication!!!!!!!! I was put on narcotic pain meds for my flare ups and a special muscle relaxer for my spasms that's made for EDS patients. I got physical therapy for my sore joints and weak body. I finally had help.
When people at school or my parents friends asked what was wrong with me, I had an ANSWER. I could respond with my diagnosis and NO ONE could take that away. I knew I wasn't faking. I knew it was real. And that gave me hope. Because now, NOW with a diagnosis I could find others like me. I could contact others with EDS with my questions, concerns, and my support. And best of all I could receive support. The EDS community welcomed me in so quickly and I made many friends very quickly.
Without a diagnosis, I would still be severely depressed. I'd still be unmedicated, unhelped, and unaccepted. Diagnosis changed everything for me. All for the better (once I accepted it).
If you think you could have Ehlers Danlos Syndrome, do some research. Find a diagnostic geneticist and get the testing done! It's worth it to KNOW. And the security that comes with knowing is worth more.
Yours Truly,
Broken but Beautiful
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