One odd man out sitting in a chair while everyone else stands around him.

Taking a Seat

When it comes to leaving my house and engaging in various activities, whether it be meeting friends, running errands, or going to a doctor's appointment, I find my success can hinge on what may seem the smallest of chances. When it comes to MS, small things make a huge difference. Did I eat enough? Is the temperature outside good for me? How stressed am I feeling? I find that one small, but incredibly important, opportunity has a massive impact on my ability to keep up with everyone around me: a chance to sit down. Finding and taking a seat isn’t always easy though, particularly if you are on the younger side.

The need for sitting breaks with MS

As much as I hate it, I absolutely need to sit down sometimes. My legs have been a problem since my very first exacerbation. They get numb, become weak, and are often riddled with burning nerve pain. A lot of the time, I can stand and even walk (most of the time, you’d have no idea anything was wrong with me), but it takes a lot of energy for me to do that.

Sitting can help me replenish some of that energy, but more importantly, it helps me expend a little less, which means I can use it elsewhere. The chance to sit down for a few minutes can mean the difference between me staying out and being successful at whatever I’m trying to accomplish and having to go home to lay down. In addition to needing that rest, sometimes I need to sit simply so I don’t fall and end up on the ground.

Taking a seat isn’t always easy

I’m a man in his early 40s whose outside appearance might actually look pretty healthy. I was also raised to give up my seat if I see someone else that needs one. The thing is, I’m often the person that needs one, but because I don’t look like I need one, I pretty much always cede it to someone else. I’m proud of the social graces and values I was raised with, however, they didn’t ever factor in me being the needy one. Even if I felt comfortable taking the seat, I know others would look down on me. My experience with being sick but not looking sick has taught me that people won’t understand (I still always think about being laughed at by a nurse for using a cane).

The social impact

There are also a lot of times when sitting would make me the odd man out. Many social activities involve standing, which my more able-bodied friends have no problem with. Like a lot of people with MS, I don’t want to remind people of my illness, that I’m different than they are. So I try my best to do what everyone else does and then I pay for it later or leave early. That will sound stupid to some, but my pride gets the best of me sometimes.

Lack of seating options

Sometimes it’s not etiquette or pride that gets in the way, it’s that there simply aren’t enough seats. This has been an even greater problem during the pandemic; however, it’s always been an issue. Whether it’s a doctor’s office or a bar, places overbook or pack people in and there are never enough places to sit. That’s just a reality of life. A reality that is an inconvenience to most, but possibly dangerous to me (I’ve had many falls after not being able to sit).

Navigating a seatless world

There really isn’t a good solution for people like me. I have a script for a wheelchair, but I am not ready for that yet (as an aside, I would be someone with a wheelchair that still gets up a lot). Please don’t think poorly of people who do that, that could be me any day now. Using a wheelchair doesn’t mean you always need it 100% of the time. This is one of those things where there simply isn’t a great solution for me. That happens a lot with MS. If anything, I hope I’ve given you something to think about and to remind you, once again, that not all problems are visible. Not all needs can be inferred based upon what you see.

Thanks so much for reading and always feel free to share! As always, I would love to hear about your experiences in the comments below!

Devin

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