Feb. 29 was Rare Disease Day. It’s a day on which those in the rare disease community attempt to raise awareness about their diseases. I don’t think MS should be included. MS isn’t rare.
About 2.5 million people worldwide have multiple sclerosis. When I was working in a newsroom of about 100 people three of us had MS. And everyone seems to know someone with our disease. It is rare, however, when I find someone who understands what MS is all about. I think that what we really need is an Invisible Disease Day.
My Invisible Disease Day would be aimed at all the people who have told me “But you look great,” over the nearly 40 years that I’ve lived with MS. It would be directed to those who believe that MS fatigue is no worse than their tough, tiring day at the office. And to those who are under the impression that MS is a death sentence.
I’d also include people who have a friend with MS and tell us that “she doesn’t have the problems you have.” And of course, I’d need to include the ones who think that Jerry Lewis used to host a telethon every Labor Day to benefit people with MS.
Things to know about our invisible disease
I’d tell these people that I may look great, but I may have to hunt for a simple word in mid-sentence. I may look great because I have a tan and I exercise, but I may pay a price for that because heat can be my enemy. So can cold.
I’d tell them that when it hits, MS fatigue can hit like a ton of bricks. It can keep some of us from attending a family gathering or taking in a movie. At its worst, it can keep someone from being able to hold a full-time job — or even to work at all.
I’d tell people that, far from being a death sentence, the average life expectancy of someone with MS is only a few years less than average. And I’d tell everyone who has a friend with MS that our disease treats each of us differently.
Those are some of our invisible symptoms. My trouble walking and my occasional need to rush to the bathroom don’t need a special day to highlight them.
As for the Labor Day telethon, Jerry Lewis hosted one for many years for muscular dystrophy, not MS.
There’s a week for that
As it turns out, we don’t need to create an Invisible Disease Day. There’s already an Invisible Disabilities Week in October. I’ll remind you that my MS isn’t rare, but it can be invisible, then.
(A version of this post first appeared as my column on the MS News Today website).
(Featured image by nangreenly from Pixabay).
