I’ve been living with EDS for several years I was diagnosed with a Chiari malformation type 2 when I was 17 years old I had severe complications without surgery which resulted in staph infection in my head and I was diagnosed with EDS 3 years after that you think I would be used to waiting for results but I’m not I had about 30 tests done for my EDS and I have several more to do and I’m terrified to get the results of them every time I get a test done I get a negative result and I am scared I can’t get it out of my mind thinking something bad is going to happen I have no one to talk too who understands what I’m going through
For those of us with rare conditions, we understand exactly what you are going through. Waiting for results is never fun and when having multiple negative results it can make it even worse.
I try to look at things logically: What can I do about it? More often than not the answer is ‘Nothing’. I must wait for the medicos. I’m presently waiting for an appointment with the specialists and if I really sitdown and think about it… …ohh boy, I can go to some damn awful places. But again I have no control here. I MUST wait for the dr’s to do their bit.
Is this an easy process? HELL NO!! Not at all, but until a decision is made by the dr’s, me trying to deal with it all is impossible. In fact me trying to deal with any of it prior just makes things worse. I would love it if the medicos would make the decision, then I could at least make a plan and work within that plan, but I can’t make the dr’s do anything. So in the meantime I wait (and stew and stew and ….)
Do we understand? very much so. You are not alone in dealing with any of this but I’m sorry to say, there is no easy answer. It took me over 25yrs to be able to actually get a diagnosis, but the diagnosis was just the start of the journey and since then it’s been more of a roller-coaster than just a journey.
Merl from the Moderator Support Team
I know how it is waiting for test results and they are never in a hurry to get back to you! I usually hang out with friends more often than normal when I am waiting on results to take my mind off of it. I have been having to wait for test results for 16 years, I don’t think you eve get used to it. I totally understand what you are going through.