I'm What Disabled Looks Like
This past year, the National MS Society ran a fantastic campaign during MS Awareness month where they encouraged people suffering from the disease to tag pictures of themselves with the #thisisms hashtag. Sort of a way to show that people who suffer from Multiple Sclerosis may not look like what you expect. Along those same lines, I wanted to take it a step further and point out that being disabled may also not conform to what you expect. I feel like I am a pretty great example of someone you would never think is technically disabled.
I am not on disability by choice
I’ve detailed how I got to this point before, so I will try not to rehash that here. Suffice it to say, I am not on disability by my choice. My body placed me here. My doctors and those I worked with deemed me unable to function at my job anymore. So much so that I was approved for disability on my first submission, which is rare. That, to me, was just an awful feeling, to no longer be able to work at the career you felt you spent much of your life building. Like most people on disability, I hate it, and I would do anything to have my old life back. A lot of people see me and learn I am on disability and likely think I am lazy or that I want to be here, but I assure you, I don’t. Aside from pride and the sense of accomplishment I had in my career, which are extremely missed, I wouldn’t have willingly left a six-figure salary for what I get on disability, which barely allows me to survive.
There is so much that people don't see
My appearance, however, is hard for people to understand. I’m 40ish, usually able to get around without my cane (let alone a walker or wheelchair), and if you saw me in person (or on social media), you’d probably never think that I am disabled.
I’m not what disabled looks like to most people, and I know it. Most people only ever see me when I am at my best or when my symptoms are there, but not visible to the naked eye. Like many people with MS, I put on a good smile and try my best to go about acting like everyone else (fake it until you make it right?). Appearances, as they say, are deceiving. I may be out of the house, but may also be in pain, or having problems walking, or seeing, or even thinking. There is so much that people don’t see as well. The long periods confined to bed or the couch, difficulty showering, horrible, uncontrollable spasms, etc. The invisible nature of most of my symptoms is enough to make people think I’m not disabled and shouldn’t be.
My appearance causes confrontations
Like others who are disabled but don’t look it, I have had problems using my well-deserved handicapped placard. Even if I look fine on the outside and even if I appear to be moving well, I every bit need it (I can get from point A to point B well enough, but only if those two points are short and the weather is cool, otherwise I’m likely to fall. If the conditions aren’t just right, I’ll pay for them later too). I seldom use my placard though, because my appearance causes confrontations (and I’ll be honest, I’m disabled, but I’ve still got a little bit of fight in me, maybe even more than in my past). I have even been attacked on my own personal Facebook page, by someone who reads my articles. Slamming me for posting a picture of myself with a beer (I now have a separate Facebook page for readers to communicate with me, because there are a lot of judgy people out there, even in the MS community. I want to help people, but not be attacked). Yes, disabled people drink beer. Disabled people do a lot of the same things that everyone else does. We aren’t always able to do them though, that’s probably the biggest difference. Just because we may look happy and normal when you see us, it doesn’t mean we aren’t actually suffering and it doesn’t mean we won’t suffer later, because we most certainly will.
I try my best to look and act like everyone else
I typically have one or two days a week when I get out of the house and try to put on my best attempt at looking like everyone else. If someone sees me during that time, and finds out I’m disabled, they’ll be in shock, they’re likely to think I’m scamming the system or something. That’s one or two days a week, if I’m lucky. The rest of that time I’m usually confined to my house and having problems. So never assume that because I look good, that I am good or am always good. I’m usually far from it. Like others in my situation, I also do my best to not look disabled. Imagine that, right? The nerve of me trying to look and act like everyone else, but that’s what I do. I’m disabled, but when I have the chance to be like everyone else, to be like I used to be all the time, I sure as hell take it.
People who have MS are people, too
People who are disabled, just like people who have MS, are people, too. Most of us look just like everyone else, because looks are deceiving. We aren’t forced to wear a scarlet letter so you can identify us (a big blue D perhaps?) So as I so often do, I want to remind people to not judge a book by its cover (and especially not by its social media profile). Not everyone who is disabled fits the image that society has thrust upon us (the traditional symbol of a wheelchair for handicapped doesn’t help), just as not everyone with MS looks like society think they should.
Thanks for reading!
Have you ever experienced a "weird" symptom and wondered if others with MS have experienced it too?