AndyPR
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Blog by Jamison Hill that discusses some issues that, hopefully, sooner rather than later our community will have to address, at least in some way.
More at https://jamisonwrites.com/2017/09/03/a-disease-identity-crisis/I’ve had MECFS (chronic fatigue syndrome) for more than six years. In that time my mentality has followed a meandering path from terror to confusion to denial to acceptance to advocacy. Now, however, I find myself in a different frame of mind that is a result of new developments in my own health as well as theories of patients and top researchers in the MECFS community.
As I wrote a few weeks ago, I was diagnosed with Lyme disease in January 2017. It wasn’t long before this that I finally accepted (and understood) my diagnosis of MECFS and decided to get more involved in the community, even advocate for more government research funding. So there I was, just settling in with the singular focus of MECFS, then I had to try to understand a whole new disease. It was like studying for an algebra exam, only to find out the test was on geometry as well.
After the Lyme disease diagnosis I had to share my focus and energy between it and MECFS, which admittedly I haven’t done very well. I’ve yet to give Lyme disease nearly as much effort as I’ve given to MECFS. But for legitimate reasons: (1) I was diagnosed with MECFS first, (2) I’ve had it longer (I think), (3) I’m not entirely convinced my Lyme diagnosis is accurate, and (4) MECFS is more misunderstood and trivialized than probably any other disease, including Lyme disease.
But in addition to Lyme I have other conditions like POTS (postural orthostatic intolerance syndrome) and diabetes insipidous. So basically I’m a chronic illness collector, however involuntarily, who specializes in the misunderstood diseases. I’m scared to even consider that I might have other diseases that fit the mold, like fibromyalgia.
All of these diseases have come together in my body to thoroughly confuse me. They have created a disease identity crisis in my mind. Which one do I associate with? All of them? Just MECFS?
If my collection of chronic illnesses wasn’t enough, I’ve noticed that there is a theory within the MECFS community becoming more prevalent, and it has served to only further my identity crisis. The theory mentioned by both patients and MECFS researchers is that the disease might actually be multiple diseases, not one mysterious illness.