The first I heard of a possible explanation for my symptoms absolutely terrified me. I thought it was impossible that there was something so "wrong" with me as a human being. Having a genetic disease made me feel like there was something awry with the central hardwiring of myself; some major malfunction that separated me drastically from everyone else I knew.
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The Diagnosis
Being diagnosed by clinical presentation is not an easy, forgive the pun, pill to swallow. To over simplify the experience for the sake of interest, the process goes something like this:
Doctor: Can you do this, this and this? Do you have this problem? That problem?
Patient: I guess so. Sort of. Yes. Probably. I'm not sure...
Doctor: Sounds like you probably have this disease. Let's call it that.
I left the office and thought. How ridiculous that there is no "test." That was the test and the best he could offer. I thought it was crazy to call that a "definitive" diagnosis. I suppose that was why the diagnosis was qualified by "probably." I was certain I could put this out of my mind without giving it another thought. There's no way I was going to allow this experience to make me think there was something so major wrong with my body. I was no different before I went to the doctor than when I left and I felt like I functioned pretty well before anyone spoke otherwise.
I realize that you must be wondering how I could be undecided as to whether or not I had an actual ailment. I was in a grey area because I had always functioned "normally" within my world. Hearing that other people do not have pain regularly was difficult to understand. Other people had headaches and joint aches right? My joints had always been loose as long as I could remember, so it was normal to me. I spent the better part of a year convinced that it was a bogus appointment and that I didn't need to listen to any geneticist who could offer no "proof" in the form of a blood or skin test.
About a year later, I saw a different geneticist for a second opinion. This time, I shared with the doctor that I'd had my doubts. He was less vague than the other doctor. He offered a guarantee that he was certain of my diagnosis based on clinical symptoms. I pleaded that I thought my pain was from pushing myself in sports. He asked if any of my teammates struggled as I had. The hadn't. This time, I felt I had to listen. He was right and the first doctor had been as well. It helped his case that between appointments, I developed other pain issues and had two failed shoulder surgeries. There was clearly something wrong with my joints.
I believe denial can be a normal part of the process. Nobody wants to hear that they have a problem. I really read into and interpreted the meaning of this "problem" in ways that were not helpful.
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Working Toward Acceptance
I spent the next couple of years of my young adult life attempting to understand and connect with the disease. If you can't beat them, join them. Right? I accepted having Ehlers-Danlos Syndrome as part of my identity.
I probably took it on as a greater portion of my identity than what I needed. It was definitely helpful to reach out to other affected people. It helped to hear that I was not alone and to hear the things that helped them stay motivated and on track. Those things also helped me to be motivated.
I felt I needed to learn this disease inside and out. I believe this drastically influenced me to change my career path to nursing. Burying myself in knowledge made me feel like I was staying one step ahead of the disease.
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Finding a Place for EDS to Fit
Over time, I felt like I had done my part to get acquainted with this disease. I attended conferences. I made friends with EDS. I sought supportive treatment and stabilized my symptoms somewhat (there is nothing curative out there, only support for the symptoms). I felt like I knew what to do when the pain set on and while it still wasn't easy, it became something I was used to.
I slowly began to feel that less of my identity was tied to EDS. It felt good to let go a little and be more of myself again. I don't worry about what is going to become of my future because I will have challenges. I don't feel helpless to unrelenting pain (at least not as often as I used to). While it does affect me daily, I am so used to it, that I do not recognize it the same way.
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I put this out there because I found it so helpful to hear from other people that they too have climbed the mountain before. At my worst pain experiences, I told myself that my friend advised me she was twice my age and had been where I was twice before, so she always knew that if some other body part started to fail her, she would be able to climb the mountain again just as she had before. This advice was so valuable to me. I felt like there was hope that if I just kept going every day, I would make it to the top. I did. I have done it again since then as well.
Maybe other zebras out there are finding themselves confused by the diagnosis or feeling as though the disease has taken over their identity.
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