The Terror of Meeting New People: "Wait, YOU are on disability?"
Being sociable and at ease when meeting new people is something that I feel I’ve had a natural knack for most of life. I consider myself very lucky to get along with folks easily, even if I have just met them. Like many aspects of my life, that is still very true, however, like a great white shark hiding below the surface ready to attack, I now have an issue that I never expected. My life with multiple sclerosis has now given me some embarrassment and anxiety when people for the first time.
For me, this feeling of embarrassment strikes to the surface the moment that always popular question comes up. “So, what do you do?” We live in a world where we are defined by what we do for a living. Well what do you say when you are on disability and your primary job is just being sick? The biggest issue for those of us with MS, or another invisible disease, is that it just looks unbelievable to those we meet. I’ve had many a tilted head and “really?” responses upon explaining my situation. How can that be? But, you look so good? Hold on, I know someone with MS and they’re fine. Wait, but you are here, you are even drinking a beer. Are you a faker? (ok, that one they don’t say out loud). Sometimes they may not even think anything of it, but that doesn't stop me from imagining it and being embarrassed.
Now, I completely understand if they are confused and wonder about it. I most certainly don’t begrudge them those feelings. I put myself in their shoes, and I’d wonder or think a few things myself. That absolutely makes it worse for me because I’d probably have the same or worse reaction had I not experienced the disease myself. Many times, to just look at me, you’d have no idea anything was wrong. Just like those calm seas with deadly sharks below the surface, many with MS have a completely normal looking appearance but a torrent of issues underneath. Many of us have also become very adept at putting up appearances. That’s why there is that embarrassment, because people often don’t understand what they can’t see.
Even I sometimes wonder what I do. The answer to that varies a lot depending on how I am doing that day. There are certainly days when even getting out of bed or off the couch are a challenge. I started a hobby that I could do on my own time, collecting and selling toys online. It’s something I can do at my own pace and won’t matter if I miss a day. I’d be insane without it. I also do therapy type things, like building Mega Blok sets or doing online brain games like Lumosity. I know that if folks could see me, sitting there on a random afternoon and having trouble putting together a simple block set because my hands are numb and because my brain can’t understand the steps, they wouldn’t wonder at all why I am on disability.
For the most part, if people see me or are meeting me, I am at my best. They don’t see the prep work that went into that. The days resting up, the sitting in a cold room or with a cooling vest on to get ready to go out, all the additional medications I’ll take before venturing out. They also don’t see the aftermath. The lying in pain for a few days, the memory problems, the fatigue, but also the insomnia. I think to myself, if people could see the whole picture, they wouldn’t judge or wonder at all. And I certainly wouldn’t have any anxiety about telling them my situation.
So how do I deal with this? Sad to say, in the past, if I didn’t think I’d ever see them again, I’d just lie and tell them what I used to do. Sometimes I didn’t even do that consciously, I just defaulted back to what I’ve said countless times over the years. Most of the time though, like most things with MS, I just deal with it. I tell them my situation and then try to impart some knowledge about it. That’s the real issue here, lack of knowledge. I try to use these moments like I use these stories, to increase people’s knowledge about the disease. In fact, I’ve started to look forward to them! If we all do that, in time, maybe less of us will experience the fear and anxiety of explaining our situation.
How many specialists did you see before finding "The One"?