When Multiple Sclerosis Makes It Difficult to Stand


I can’t stand.

That’s the entire sentence, not an abridged version, nor is it a double entendre. I really have a difficult time standing in place.

For the most part, I can still walk normally, although I do have some bad days where moving around is difficult and it might require assistance from a friend or the use of my cane.

Even when I’m feeling well enough to walk, my wobbly gait causes me to bump into things and I’m always tentative around stairs, judging each step carefully.

But, if I’m upright – I want to be moving. But not standing. If I’m standing, it’s unbearable.

Specifically, the problem is my left leg. Within just a few moments of standing in one place, a burning sensation swells up on my left side, above and below my knee.

Unfortunately, there’s a whole lot of standing in this world.

People love to stand at parties. Whether it’s during the holidays, a house-warming or even just a group of friends getting together – standing is involved…and lots of it.

Perhaps it’s a comfort zone we all just gravitate to, but unless it’s a gathering that revolves around watching sports, there’s a good chance most people will be standing while they socialize the night away.

Maybe it’s just what we know and are used to. When you see your neighbor, say hello and talk a little about your day, you don’t pull up a chair, sit down and talk – you stand.

Run into an old friend at the grocery store? There is no clearing some space on the store shelf next to the peanut butter to sit and chat.

I’m not a fan of having my picture taken because unless taking the picture involves sitting, for me it’s pure agony. I smile through the burn, but I’m no actor, so often you can probably read the pain and anguish on my face.

Most errands – they all involve standing in line.  And usually lots of it.

During my final few years in corporate America, a new trend was popularized: the stand-up meeting!

Because, why not? The theory was the meeting would be shorter, more informal and spur creativity. Perhaps…

All I remember was grimacing in pain, staring at those comfortable chairs – imagining they had come to life, laughing at us as we stood there – as somebody went through a litany of issues that really didn’t even require a meeting in the first place.

I don’t think I’m alone in my disdain for standing. There are many negative connotations associated with this word.

Worried you aren’t going to make that flight home? It’s because you are on stand-by.

Unable to get tickets for the game or concert? Sorry, it’s standing room only.

Somebody being unfriendly? They are probably a bit standoffish.

Unable to accomplish a big task? You don’t stand a chance.

Still, I often dream of being able to comfortably stand again. When I’m out, I’ve caught myself being envious of others that are just doing nothing…while standing around. I literally marvel at their ability to do so; for me, it’s a lost art, a relic of another time, in a different universe I used to live in.

Over the years, I’ve had to learn to adapt to standing.

I have a cane to assist on days that are particularly trying.

Also, I’ve somewhat perfected what my wife calls “the flamingo.” During conversation, taking a picture, anything that is causing me to stand in place, I slightly raise my left leg up so that all my pressure and weight is on my right side.

It sounds silly as I type it, but this flamingo-like pose has helped me through some painful moments.

The other alternative is to just avoid the standing altogether. So, I’m selective with my errands and shopping to minimize any potential standing. Or, if I’m at a public gathering and everyone starts to gather for the stand-around, I just go find a place to sit.

I’m not entirely comfortable being “that guy sitting in the corner” by himself, but it’s better than being “the guy who is going to be in agony for days because he refused to listen to his body to just sit down.”

The most difficult adaptation has been letting others help me with this issue. That’s not a flip statement. Living with a disease like multiple sclerosis (MS), I worry about becoming too dependent on others.

So, my pride has to take a backseat when my friends or wife offer to find me a seat, or even give up their own chair. I don’t want the night, a party, wedding, reunion or just a random Saturday night to be interrupted by the needs of my MS, but I also know there is virtue in finding deference to my health.

As I sit and type these words, I feel a burn in my left leg. It’s a residual reminder of all the standing I’ve done this holiday season.

But the great times and lasting memories will always be something I can stand for.

We want to hear your story. Become a Mighty contributor here.

Gettyimage by: eranicle


Find this story helpful? Share it with someone you care about.


Related to Multiple Sclerosis

mom and son making sad faces

Why It's OK to 'Complain' About My Multiple Sclerosis

There’s a dominant notion that to not complain about a health or physical struggle is dignified, that it is a sign of virtue, of sainthood almost. “She suffered for years with cancer, but she never complained, not once.” “You never heard him complain about the many difficulties his disability presented in his life.” “Nobody wants [...]
A bottle filled with green liquid, sitting in some grass, surrounded by yellow flowers with the sun shining down on it.

Why I Don't Want to Hear About 'Natural Cures' for My Illness

I’m at work, taking a brief break to check my personal messages. My aunt sent me an email, and already I’m flinching, knowing what it will be. This time, it’s a document about multiple sclerosis (MS) in Guatemala – the story of a woman with MS who went to Guatemala, was treated with a mysterious green [...]
A silhouette of a woman sitting on a bench, in front of city lights.

What You Should Remember Before You Judge Someone With MS

After three and a half years of having an invisible disease, you never really get over the judgement that comes along with it. If you saw me out and about, you would never know that anything was wrong with me. Which is good, but also frustrating. If you saw me parking in a disabled spot, you’d possibly [...]
mother holding her two young daughters

What I Want My Kids to Learn From My Journey With Multiple Sclerosis

Before I began writing this I asked my daughters, 3 and 5 years old, how they would describe mommy. Their answers included: You know the answer to everything You are the tallest You take really good care of me Two of those answers are wrong: Don’t tell my husband, but I actually do not know [...]