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?
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.
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 rando’s no less. But there’s nothing I can say that’s gonna make the world sit up and get it. And why should it? There are a bazillion catastrophes at any given moment, and nobody can understand or relate to all of them. It would be 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 through anything 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. 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’ll be able to walk this block, clean this tub, make this supper, drive this car (just kidding guys, I’mLB, 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.
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.
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.
15 thoughts on “What? But, you look so good!”
i really like the way you frame this. It's a deep and nasty question. There are at least two polar extremes in disability:
==> those who are obviously disabled
==> those who don't look disabled
And it's always going to seem weird that someone who doesn't look disabled would put themselves into the same class with those who are visible disabled: because people don't see you toss and turn at night, taking your meds, etc.
While conformism is often looked down upon, that collapses when we're talking about disability. Suddenly most of us want normalcy above all, to be able to appear competent and disappear into society. I like the way you write, thanks for opening a nice new window for me.
Yes. This is a very interesting aspect of ms. Looking not disabled and being disabled. I know I'm disabled but I still want to seem abled and be viewed as abled. If I tell people i'm in the disabled category then will that trigger the pity party? I so don't want that party that I am willing to lead the double life of not telling whole groups of people (eg. colleagues) my whole story of who I am.
Thanks for your comments and for reading. Like every good TO artist I am a fan of barczablog.com and am delighted you found me.
If I could go back in time I would have kept my dx to myself a little longer but at a certain point it became necessary for me to tell people lest they draw other unsavory conclusions. I still resent having to share this though.
How long did you keep your DX private? It's been 13 yrs since DX, many people now know but not everyone. Sometimes its quite awkward not saying it.
It's bbhwithms! Just wanted to say that I loved that you referred to telling people that you have MS as "OUTING" yourself. The exact sentiment I wrote about in a post titled "Coming Out"
SO looking forward to reading more! Glad I found you and to know that there ARE in fact other MS bloggers out there that embrace the humor – " please get drunk and tie your legs together. Or, you know, Google. "
Glad to have found you too! Thanks for reading, Meg.
Wow! Just…wow. Thank you for your blog, and, in particular, this post. (However, I admit I just ''found'' you, so there might be more comments and accolades for your posts in the future). I've searched weekly–since my MS diagnosis in May of this year–for a MS blogger whose work I could not only admire for their writing talents, but also for their knowledge, perception, sense of humor, honesty and someone I could relate to… Mission accomplished! This post made me snort (yes, I admit it–and while it's rather unbecoming of me to snort, or admit to doing so, you genuinely made me laugh), tear up, nod my head emphatically, provoked a deep desire in me for immediate access to copy and laminating machines so I could distribute your words to everyone I know for Christmas and keep their gifts for me, and shout to anyone within hearing range,''I finally found someone who understands and makes sense to me!'' Being that it is 3:45 AM and my next door neighbors are a mere 60 feet from my window, I skipped the shouting for joy thing. Most of all, and most importantly right now, I feel absolutely relieved, inspired and comforted after reading (and reading) your post. I truly thank you for sharing your experiences with MS with me–with all of us.
Thanks for reading Jennie and thanks for your generous comments. I'm glad you found me and I hope you eventually got some sleep!
I wish there were more of you out there who understand the junk we go through and are not afraid to say it! Well done and you help me put a smile on my face! Keep p the good work as it means a lot to us MSers out there! Give big points to the Banker as they are not all as nice as he is! I will read your fabbo blogs every day so thanks.
Thanks for reading Jana!
Someone in an MS support group asked me, "Are you sure you have MS?" For real. This was a good 8 years after diagnosis, while in a drug trial. So, yes, I am sure I have MS. I guess that's how good I look.
OR, when my primary care doctor said, after a full physical and blood workup, "You are in really good shape! [long pause] Oh … Except for the M.S."
Wow. I expect to hear these things from people outside of the MS world, but in a support group? That's next level.
Just “stumbled” upon your writing! Love this blog! You are gifted with words, my friend. Keep it up; many, many of us feel the same way, but can’t express it as well as you!
Thanks for your kind words! I'm glad you found me.