|duh, wtf were you expecting?|
If you have relapsing-remitting MS (RRMS) chances are you’ve heard some version of this. It’s not even unique to multiple sclerosis. It’s a refrain familiar in all chronic disease communities where invisible illness is common. “But you don’t look sick!” is what comes immediately after outing yourself with some dreadful but mysterious condition.
Is there something about a disease like MS that renders its victims exceptionally attractive? Don’t get me wrong. I love hearing about my good looks and great hair, but rather than feeling like a true compliment, this one smacks of disbelief; of incredulity there could possibly be anything wrong. I was once asked ‘Are they sure you have MS? You don’t look sick.’ I was tempted to say ‘You don’t look ignorant’, but of course, she totally did. (She was wearing Crocs.) The whole thing feels like a sneaky accusation of phony fakery. Of laziness. Of ‘It’s all in your head, you whiny whiner’. Let’s face it. ‘But, you look so good!’ is ig. Over and again it compels us to provide proof we are actually suffering.
And then there are our own unhealthy judgements. When I see that suspicious look, my own doubt is reflected. I can’t see my symptoms any more than you can, and most of the time I think if I just try harder I’ll be able to walk this block, clean this tub, make this supper, drive this car (just kidding guys, I’m LB, duh). We’re hardest on ourselves. While we suspect you think we’re not trying hard enough, we wonder if it’s true. We repeatedly ignore the messages our bodies send and try to rally. The physical struggle might be about the strength of our bodies on any given day but the mental one is often a battle to simply will ourselves to do that which, based on how we look, we think we should be able. What we need to tell ourselves is the same thing we need others to understand.
It would go a long way to hear ‘this must be difficult’. A simple nod to what we’re dealing with. MS is complicated. If you’d like to know more about what it’s like, please get drunk and tie your legs together. Or, you know, Google.