There are many emotions that come with having an undiagnosed pain condition. For me, the most prominent emotion is fear, because I am in so much pain all of the time and have no idea what is causing it. This makes my mind race, constantly worrying and thinking of the worst possible scenarios. I then obsess trying to find patterns and causes and figure out what makes the pain worse. This causes my anxiety to sky rocket, and although I try to be patient and grateful that the doctors are doing all they can to try to figure out what is going on, it is very difficult to wait for a diagnosis.
I also find myself feeling helpless, because I don’t know what the problem is, no one can tell me how to fix it. I don’t know how to make it better for myself; I don’t know whether to push myself or whether that might make things worse and it is better to rest; I don’t know whether I am taking stronger and stronger painkillers, which may be pointless and causing other problems for my body. I feel very frustrated, because without knowing what I am dealing with, I don’t know how best to manage.
As far as the doctors go, I have been lucky so far, as they are doing their best (with a little bit of pushing) to try to get answers for me. I know this is not always the case for some people, so I do feel blessed in that respect. However, the attitudes of some doctors when I try to explain the pain is everywhere and I have no idea what is causing it, seem to be very skeptical. I get the distinct feeling they think I might be exaggerating, which is confusing and extremely annoying, since I wish more than anything the pain didn’t exist or wasn’t this bad!
Overall I try to manage the best way I can, and be patient in waiting to find out what is going on. I try to remain positive, as I know that I can get through this with the help of my support system, and I just need to keep pushing on.