Today I read this story about Selma Blair, the actress, about how she is dealing with her MS and the support she received during ‘Dancing with the stars’, and it did something with me.
Previously I had mostly annoying thoughts about Selma Blair and her MS diagnosis, because I didn’t see myself in her. She had symptoms like speech issues and pain. I didn’t really. Until my last flare up where half my mouth temporarily went wonky, but that seems to have resolved mostly. But besides our difference in MS symptoms, I was mostly annoyed with her being so public about it, because I think it created an incorrect picture of what MS is and how it can be effectively treated.
So there she was, all elegant on the red carpet with her cane. Going for stem cell treatment, which seemingly resulted into her being able to take part in ‘Dancing with the stars’.
The image that I got, pretending to be a not chronically ill person, was that MS was treatable and after that you’d be able to get back to ‘normal life’. This of course is total bull.
What people don’t see, and I can only speak for myself, is the fatigue and insecurities that someone with MS deals with. I bet that after a tv performance she’d have to rest for a substantial amount of time, but we don’t see thát of course.
Anyway, after reading that story, I started rethinking some stuff. I realised that I’ve been doing the opposite. I’ve almost embraced the fact that MS is an invisible illness.
I’ve received my diagnosis 21 years ago and I think I am still struggling with truly accepting it. Possibly because it’s such an on and off type of disease for me.
When I have a flare up it’s clear: I’m ill. I literally cannot do certain physical things. I can’t deny it then. People can see it too and I have to fess up. But when I just have a bad day, which is generally triggered by stress, I hide. Because when I hide I don’t have to explain, I don’t have to feel their pity and experience any change of their behaviour. I don’t want people to suddenly take tasks away from me because they think I’m disabled. Even when this might be the case at that time.
For instance, one of my weaknesses that show on a bad day, besides fatigue because that’s never really gone, are my legs. My walking becomes wobbly. I have had crutches for years, yet only a handful of people have ever seen me use them. Why? Because when I need to use them, I just don’t go out. I hide. Something that Selma Blair is not doing.
I would like for people I know to understand me better but I know I’m also making it almost impossible for this to happen when I’m not sharing about my illness. My friends know I have MS but not really how that affects my daily life and that of my family. And how I keep all this safely hidden to try and appear normal. Which of course is ridiculous, but I can’t bear the thought of appearing needy or even an inconvenience to anyone. And asking for help? I don’t think I even know how to, without feeling horrible.
I don’t want to seem weak. I don’t want to seem disabled. I don’t want to seem dependent. I don’t want to be different… but I am.
Maybe it’s time to embrace that and work with it, just like Selma has done. I just need to figure out how…
Brainwaffling 