My legs are bad this morning, I wasn’t wondering around more than usual, but I did stay up one whole half hour longer than usual, probably nothing to do with it, but sometimes it good to have a reason even if it is wrong. Not knowing why is always part of MS, once you have your diagnosis you still find yourself asking why is that hurting or what caused that cramp, not everything is the fault of MS. For the first couple of years after my diagnosis I blamed everything on MS, from a cough onwards, it was my Doctor who eventually convinced me to see that blaming MS for everything was silly and the pain in my neck and ear was more likely an infection that just needed a course of antibiotics. I guess it is always good to be open minded about it.
Even without a chronic condition I expect most of us will find a hundred reasons not to go to the Doctor and just wait and see if it goes away on it’s own, I am probably worse than most, I spent so many years being told that there was nothing wrong with me and I really don’t ever want to be told that again. It sounds a little nuts really that you could ever get to the point were all you actually want is someone to say you are ill. I know thought that I am far from the only person to feel that way, I have spoken to many others, who have also been almost begging their doctor to tell them they are really ill and not just going mad. None of us, ill or well like to be accused of telling lies when we are not, but when you give a Doctor a list of symptoms and they run all their tests, then they tell you they have found nothing, is far worse than that. It feels as though not only do they not believe you, but they have scientifically proved you are telling lies about all of it. Imagine how that feels and then add on to that having to go home and tell your friends and family what they have said, all the time inside you are still feeling as ill as you always do.
Being told that you have an untreatable chronic illness should be the worst thing anyone ever tells you, I remember a huge mix of feelings. Yes I had just been told that my life as I knew it was going to slowly slip away from me. That I was going to be in some degree of pain for ever and I would loose control of many bodily and mental functions, but they had also brought to an end nearly 20 yrs of worry, fear, doubts and disbelief. Having that lifted from me was wonderful and I think I actually lessened the initial impact of what MS was going to do to me in the future.
A few weeks ago through twitter I met a lady who is still at the point of not knowing what is wrong, it could be anything at the minute, she is going through that process of tests coming back clear. To her and to every other person out there who now both hoping and dreading what the doctor might say, I will say this to you. If you are sure, 100% sure there is something wrong, if you have a list of symptoms that are real and make your life difficult, if you can take yet again being told there is nothing wrong, don’t give up, keep going back to the doctor, keep showing them the impact and reality of what you are going through. If you let them dismiss it as nothing, they will treat it as nothing, show them it is there, it is real and you won’t accept another brush off. Remember if they are running test for the wrong illness, everyone is well. They have to understand fully what is happening, so they can then run the right tests. Oh and most important of all, don’t try to self diagnose it makes things worse, believe me on that one, I know.