Pfft. Just so we’re clear. This doesn’t mean you actually look good. I mean, you’re probably not bleeding and there’s a good chance you’re standing up. Maybe you’re wearing lipstick. You don’t look bad but that doesn’t necessarily mean you look good, either. It means I can’t tell what’s wrong with you just by looking. It means where’s your damn wheelchair?
Every relapsing remitter hears this. It’s not even unique to multiple sclerosis (MS). It’s a refrain familiar in all chronic illness communities. It’s 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? I wish. Don’t get me wrong. I super 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 looksick.” I was tempted to say “You don’t look ignorant,” but of course, she totally did. (I think 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 ignorant. Over and again it compels us to provide proof we are actually suffering.
I hate this sentence.
I could list all the invisible ways in which MS affects me. And I’ve totally blurted out way more than I’m comfortable with (to nosy randos, no less). But there’s nothing I can say that’s going to make the world sit up and “get it.” And why should it? There are a bazillion catastrophes going on at any given moment and nobody can understand or relate to all of them. It would be utterly exhausting and emotionally unbearable. The best response I can hope for is the benefit of the doubt. You don’t know, maybe you wanna learn, maybe not, and that’s cool, too.
Because why is it so important people know we feel like garbage, anyway? What drives us to try to prove we have a disease? Why do we get our backs up when half the time we’re trying to pass for “normals” anyway? It’s frustrating when others can’t see or understand the limitations of MS. There are practical implications. And, the last thing anyone struggling or fumbling through something needs is to get the side-eye of doubt from some jerk. When that side eye is coming from friends, family or coworkers, it’s even worse — it’s not about seeking sympathy so much as it is avoiding asssholery. That raised eyebrow is adding insult to injury and it hurts.
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 will be able to walk this block, clean this tub, make this supper, drive this car (just kidding guys, I’m legally blind). 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.
MS is real. MS is hard.
If some poor befuddled person is driven to reconcile what they see with what is purported to be reality and thus wants to learn about MS, it is fortunately really easy. (Hint: Google). There should be no pressure to explain the finer points of what this life is like. You don’t owe anyone an explanation of something so personal. Imagine asking anyone you barely know to explain their biggest problem, most intimate struggle. Boundaries, people.
We’re all curious, judgemental bitches from time to time. Let’s show compassion, and before we glibly assess anyone else’s anything, pause a moment and ask how we could find out more. We have no idea what battles others are fighting, just as they can’t see ours.
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.