I go through stages. Such as times when I want to deal with my illness, I want to get help, I want to do the tests and hopefully find an answer. Or rather THE answer. I want that final sentence that sums everything up so succinctly and with such hope: “You have ‘abc’, it will affect you with ‘def’, but we can treat it and cure you with ‘ghi’.” So for a while I run myself ragged and I go to doctors and go through tests and despite all the work and effort I put into feeling better, I have yet to hear that sentence. The closest I’ve gotten was “Well, you have Ehlers Danlos, so until they can do gene therapy, you just have to deal.” That’s not good enough. That doesn’t address the pain and sickness I feel. That doesn’t cover what is associated with my disease and what I should expect. In fact, it doesn’t help at all. So eventually this all boils over and I reach my limit. I begin to not seek help for things I should. I put off going to see more doctors and more tests. I stop caring. Nothing I’m doing or have done has helped. Each appointment is met with either “well, I don’t know what to tell you” or “I have some bad news..”. It’s just an endless cycle, where the BEST I have to look forward to is “nothing’s changed, nothing’s new.”
I’m in the stage right now of just not caring. I’m tired of dealing with doctors and tests all of which seem pointless. I have an appointment set up with a specialist and for now, that is enough. I will not find a GI. I do not need to go through that right now. I will not find a Gyno. It can wait. Sadly, EDS is not something I can truly and forever escape. Or even just escape for a little while. I do have an appointment with my GP and I will show him my new tumor (not that I even know if tumors are associated with EDS or not). I will see where that leads me and if that involves tests. So even when I tell myself I am taking a break and am being healthy and whole, it’s not entirely true. Also, no matter how many doctor appointments I cancel and tests I avoid, I still have to deal with my daily reality. I guess the biggest thing is that I am telling myself I am taking a break. Perception is my comfort place.