Not Fitting in to my Disease Community

About a year ago I was at a rheumatologist appointment and we were discussing a new symptom, I don't even remember which one it was, my rheumatologist said Lupus could cause it but for what ever other reason I did not have Lupus. She said "Usually not having Lupus is a good thing, but at this point I am sure you just want a name." In that moment I finally felt like someone finally hit the nail on the head.

I never wanted to have a lifelong possibly life threatening autoimmune disease. Yet that was not a choice I had. As my symptoms progress and have had more and more of an impact on my life and caused me to grow up in a way that has made it hard to relate to people my own age sometime I earned for a group where I fit in. As the picture of what I had planned for my future changed I felt a need to talk to someone going through the same. Every time someone asks about my feeding tube, central line, and any other parts of my health I just wanted a simple answer.

If I had to live with all the challenges and complications my health has caused I wanted a name as to why. I wanted support groups and walks. I want to participate awareness campaigns and to read about the latest research. If I was going to continue to fight with everything I had how could I fight against an unknown villain?

As I mentioned in my last post I had confronted the fact I might not get that overarching diagnosis. I guess I could have live my entire life that way but there was a part of me that would always yearn for a disease community to relate to a fit in to.
Look! Such a Pretty Awareness Ribbon!

When I was finally diagnosed with Sjogren's I thought I would finally have my community, my support groups, the research, and the walks, all of it. However when going on Facebook groups and forums, even looking through research studies I did not have the sense of belonging I had expected. I had read that Sjogren's generally effects woman in their 40s and 50s, I guess I just did not understand quite how few people my age had it. I knew my ANS manifestations being so severe that I have a feeding tube and central line where not common but I did not realize I would only be able to find one other person with a feeding tube in support groups of thousands of Sjogren's suffers, and no one else seems to have a central line. One person even told me I was too sick for it to be caused by Sjogren's, it must be a misdiagnosis because my level of severity was not possible. Part of me thinks she was upset to think that a disease we share can be so damaging.

Once again I cannot seem to relate to anyone else in the community. I am so much younger and so much more severely affect it seems. It is odd because I have never thought of my self as too young to be sick or even sick really. I am me and my health is just not ideal. Unlike before I feel a little more empowered. I can become an advocate and show people all the ways Sjogren's can affect your life and that it can in fact be a life threatening disease. I think there must be other Sjogren's suffers who are like me and I plan on going out to create a space for them.

No comments:

Post a Comment