For years I thought ‘if only I had a diagnosis, I could tell people what was wrong with me and they’d understand, not wonder what the hell I was playing at…’
Now I’m diagnosed, I’ve barely told anyone. I find it easier to answer questions with ‘I have a problem with some of my nerves in my spinal cord which is affecting my senses/my muscles’. Sometimes I need a walking stick and I say ‘I have a problem with my hip’.
Partly, it’s because my mum is still in denial. Before I got diagnosed when I told her we are probably looking at MS she said ‘don’t you dare mention that word again, the doctors would have said if it was that (they did, she just didn’t listen. She was positive and still is that it’s something else.) Don’t go round telling people that’s what it is!’
But, also, you tell someone you’ve got MS and you may as well have dropped down dead in front of them. As far as people are concerned, it’s a death sentence. They don’t know anything about it really. I’m lucky enough to have quite a decent prognosis. Obviously, for some people, it progresses really badly, and I am actually finding myself just passing my DX off with a shrug because, you know what, it isn’t as bad as what it could be!
So, what do you say? I’ve got MS, BUT IT’S NOT SO BAD, HONESTLY!
I just don’t know. I’m confused. sigh