The Waiting Dilemma: When Appearance and Courtesy Get in the Way
Discussing the difficulties of the invisible nature of Multiple Sclerosis is something that I do often. This aspect of the disease is one that has proven extremely difficult for me, so I am constantly on a mission to make people think more about it. I want people to read and share the stories I’ve written about it, in hopes of making others become more understanding and slowly getting more people to not simply judge a book by its cover. One type of situation where the invisible nature of my symptoms often affects me is when I have to stand and wait. Being the person to sit when others stand can be pretty difficult when you look like nothing is wrong with you.
Seats for the elderly or disabled
Waiting: we do it everywhere. In line at the store, or at a doctor's office, or at the movies, or even while commuting on a train. We are forced to wait all the time, and in many of those cases, there are some seats available, but not many. Typically, you want to cede those seats to those that need them most, elderly or disabled. But what about when you don’t look like you need them? I don’t look like there is anything wrong with me, so if I take a seat and there are others around that might look like they need it more, those around me are likely to get very angry (just as I would if I were in their situation).
It's hard to stand for a long time
Standing for a significant period of time can be extremely hard on someone like me. In many cases, I will spend much of the time trying not to fall. Even if I manage to stay standing, the effort I put forth will likely wipe me out for the rest of the day (trying to maintain balance and remain upright with weak and numb legs takes a tremendous amount out of me). None of this will be apparent to anyone but me - that is, until I hit the ground. The very stress that can hit me when I think about the whole situation can also be enough to cause some of my symptoms to rise up.
Dealing with too much pride
I know some places, like England, have been trying out disability badges. Little Scarlet Letters to show people that you have an issue, and might, for example, need a seat on a subway. I suppose it’s a good idea, but, I’ll be honest, I’d still have a problem wearing one. I guess I have too much pride (something I am constantly dealing with) to use one. That’s sort of the main issue with this standing problem: the way I was raised, you give up your seat, always. No matter how awful I feel, no matter how much trouble I’m having standing, it’s ingrained in me to pop up and give up my seat. I literally do it all of the time because the invisible nature of my disease makes me biased as well. It makes me uncomfortable taking charity, even when I desperately need it.
A complication that comes with chronic illness
There’s no real point to this other than giving people some food for thought, to remind people that everyone you see, no matter how they look, may be fighting something awful. There is no solution for a person like me, who desperately needs a seat, but who also won’t take one from someone else. It’s just one of those interesting and complicated situations that come along with chronic illness. Sometimes all you can do is just bring it up and say these things happen, this is something to think about.
Does your employer provide workplace accommodations due to your MS?