So, What Do You Do?
“So, what do you do?” Probably the most common question you get when you first meet someone right? Well, it’s one I dread. In the past, I thought nothing of this small talk type question, I even couldn’t wait to answer it, but after two years on disability (or is it three? Damn cog fog!) I get increasingly worried about being asked it. For me, my education and career were a massive part of who I was, they defined me. Now that I can no longer work, I struggle understanding who I am. The added problem with this common question is that when I am normally asked, I’m sure I look perfectly fine.
Not being able to work
Being on disability sucks, there isn’t a nicely worded way to say it. For as much as people may hate working, imagine life without it? I’m not even talking about the money issues (of which there obviously are several). Working most of your life and then suddenly being told you can’t anymore is devastating, at least it was to me. I came from a family that emphasized working hard for what you want. I grew up, went to school, and then had a pretty successful career as a software engineer. I loved what I did and my career was who I was until about 13 years into my diagnosis, then I stopped recovering as well from a relapse. Issues from old relapses were now common and much more at the forefront than ever before.
Being forced on to disability
I knew I couldn’t work anymore, but I just couldn’t admit it, not to anyone, especially not to myself. Then it became out of my control. Being forced on to disability has had a huge effect on me and drives a lot of my depression. Even after all this time has passed, I still have a hard time accepting it. With this being the source of so much internal struggle that I have, it’s probably easy to understand how much I worry about the question.
But I look so good
But I look so good, right? Sure, at first glance, when I’m asked this question it would seem impossible that I’m on disability. When I say, well, I have MS and I’m on disability, I see the confused look and immediately think that they are probably wondering how I am scamming the system. I worry that they are probably thinking of their aunt’s best friend’s sister on their mother’s side who they are pretty sure has MS and she’s fine. I worry that they see me and because my symptoms are invisible, they think I’m just fine and should be hard at work every day, just like them. I worry that they see me and think I am just lazy and a freeloader.
I can't explain what I'm really going through
I can’t answer with a full explanation. I can’t tell them that yes, I look good and able-bodied at the moment, but I’m struggling to stand (or even to sit upright if we are seated). I can’t tell them about the falls. I can’t mention the searing pain running through my body as I struggle to put on a fake smile. I wouldn’t dream of telling them how I’ve really just been nodding along for much of the conversation because my mind is all over the place and my short-term memory is near useless. I can’t explain the effort it takes me just to be here talking to them. And they won’t see the aftermath, the punishment my body will inflict on me over the next few days for daring to be out of bed and being social.
It's much more than small talk
So it’s incredibly awkward, though in real life, probably only to me. I’m sure I think about the issue way too much. After all, it’s usually a “small talk” type of question. For most people anyway. To me, it’s so much more. A reminder of the life that was, the career, the education, the status, the old me. I’ve even lied if I thought my chances of seeing the person again were slim. I’d just state my old career and move on.
Beginning to explain my new path
Recently though, I’ve begun to explain myself and feel a lot better about it. I have MS and I’m on disability. But now I go on to explain that I write about my MS and try to help other people with the disease. If I’ve helped one person, that probably is more impactful and greater than anything I ever did in my career. I’m proud of that. Other than that, I try to take care of myself, my wife, and my dog and do a bunch of other small things to fill up my time. However, the most basic and true of answers to the question “So, what do you do?”, is that I fight multiple sclerosis.
Have you experienced any of these vision symptoms? (select all that apply)