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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.

Thanks for reading!

Devin

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Comments

  • Dede74
    4 months ago

    I actually deal with the same issue as far as standing too long. My husband will notice that I start to sway and look like I am about to fall before I even noticed. I keep switching legs to put my weight on, but it soon wears on me. As far as the badge, I am so stubborn to give up and my pride gets in my way. (Of course I pay for that later) I have learned so much from all these articles that may of us deal with the same symptoms, but also many symptoms are very different. My sister and I both have MS, she deals with different symptoms than myself. I have also learned that I do not judge people anymore that are parking in handicap spots even if they look well. You just never know what they maybe living with and battling each day!

  • Devin Garlit moderator author
    4 months ago

    Thanks Dede74! Appreciate you sharing some of your experience!

  • potter
    4 months ago

    I am 66 so I am old enough and have enough gray hair that people are starting to give me a seat. They don’t know that I am standing in line with my legs on fire. When someone finds out I have MS and tells me how well I look. I tell them how I woke up last Christmas with the right side of my body numb. That shuts them up pretty quick. Potter

  • mascha
    5 months ago

    Glad yo hear I’m not the only one. I can still be active as in walking etc although the after effects i pay the price, but standing and waiting I can’t tolerate well. I get tired on my legs very quickly and have issues with this. But a reasonable fit looking me, they don’t understand when i ask for a chair ( sometimes at the supermarket) I’ve stopped asking because i get weird looks but I’ve also changed supermarket where I don’t need to wait.
    Then as you explained you give up your seat gor the elderly or get them in line first. It seems waiting is everywhere.
    I wish we had badges for MS. I don’t care how it looks. They would help enormously. Waiting at the toilets, bank etc.
    people see nothing on me at all because i also wear small heals. I figured I might as well have pain and look good. I’m in Monaco and it’s all heals. But looking this way doesn’t help.
    The invisible side I struggle eith a lot.
    Thanks for your article:)

  • Devin Garlit moderator author
    5 months ago

    Thanks so much mascha! I don’t know if I’d wear a badge or not, but I do wish people were more understanding of others.

  • 5 months ago

    I don’t know that I’d be game to wear a badge advertising any condition I have. Interesting idea.I wonder how that would play out?
    At any rate, the older I get, the more this Mark Twain quote rings true: “Opinions based upon theory, superstition, and ignorance are not very precious.”

  • Devin Garlit moderator author
    5 months ago

    Thank you Lucylucylucy, I’m not entirely sure how the badge system actually worked out, but I am working on finding out.

  • Devin Garlit moderator author
    5 months ago

    Oh, I very much agree Lucylucylucy, I can’t imagine it going over well!

  • 5 months ago

    I imagine that people would catch h*ll for wearing a badge when they don’t look “sick”,much like people that get comments that park in handicap spots without showing an obvious condition.
    I think a badge stating my mood might be better choice for warding off unwanted comments or questions.lol

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