The MS Embarrassment Chronicles
Having a body that can fail you at a moment's notice is bound to bring about a lot of mixed emotions. Painful, uneasy, depressing, even proud, living a life with a chronic illness like multiple sclerosis is full of all sorts of emotional moments. Sometimes those moments bring an unpleasant, but not often discussed emotion: embarrassment. I’ve certainly had my share of embarrassing moments due to my MS. I hope by talking about some of them, you’ll be a little less embarrassed if these things happen to you.
I’ve written before how falling became somewhat a way of life for me after a good ten years with the disease. With that, I’m sure you can imagine some of those falls being pretty embarrassing. Should they be? Of course not; after all, we aren’t falling on purpose. Two falls of mine jump in my mind as being particularly embarrassing. The first incident, I was still fairly young (maybe 29) and living on the west coast (and my years in San Francisco were especially symptom-free for me, with a few exceptions, like this one).
Foot drop & falling outside the grocery store
I was leaving a grocery store and in a crosswalk, with two lines of cars on either side stopped and allowing me to cross. About mid-crosswalk, I, of course, got hit with a bad bout of foot drop, which landed me on the ground, sprawled out, as items from my grocery bag rolled away. I was able to get up quickly and scrambled for my wares, as people looked on and the line of cars got longer and longer, with at least one car, unaware of why everyone was stopped, starting to lay on their horn. Other than some scraped knees, I was physically fine, but boy was I embarrassed and my pride hurt.
Falling and unable to get up
Another embarrassing fall happened much later. My now ex-wife was about to leave my house with her new partner. I took a pretty rough fall right in front of them, as they were about to leave the house for a date. I had an extremely difficult time getting up; in fact, I couldn’t for a while. Overly proud guy that I am, I, of course, refused any help from them and told them, a touch tearfully, to go ahead, I’ll be fine. My arms and legs were numb and weak, and I couldn’t get to my feet until over a half hour later. I had to lay there contemplating life, a failed marriage, and my illness. I can think of no fall as embarrassing and mentally harsh as this one. This incident sticks with me to this day.
Giving up on plans, often at the last minute, is a common issue for people with MS. Our bodies are unpredictable, so even the best-laid plans can be turned upside down at a moment’s notice. I have on more than one occasion had to cancel on a date, which is super embarrassing (not to mention hard to explain without sounding fake). I’m sure more than one girl has written me off the moment I canceled like that. No matter how understanding someone is, it’s hard not to seem a little shady when it comes to dating and canceling early (or at all).
I’ve actually been pretty fortunate not to have had too many issues when it comes to my bladder. Emphasis on “too many” because I have had some incidents. Of course, these moments are always when I’m out and always when I’m wearing khaki, so it’s super noticeable. Just a couple of years back, I was out on the town with some friends, when a lot of them suddenly got a little quiet. It was then that a friend of mine whispered to me to “check my pants”. Of course, I had pissed myself in a crowded bar while among some new friends. I’d been standing there for a few minutes without even noticing. Things were pretty numb down there, so I had no idea it had even happened. Yeah, pretty embarrassing, as was walking through the crowded bar to get to the bathroom.
Not so sexy times
I’ve touched on this before, but when it comes to having intimate moments, MS can have a knack for getting in the way. I’ve had my fair share of embarrassment when it comes to sex. On many occasions, I simply haven’t had the desire, which is super embarrassing and feels “un-manly”. There are a lot of ways this disease can spoil times in the bedroom. For me, lack of desire, fatigue, and taking too long to achieve orgasm are the common issues for me. No matter what specific cause, any problem when it comes to “sexy times” is bound to make you feel a bit self-conscious.
I mentioned before how I enjoy a bit of alcohol. I’m lucky that I’m able to do that, as some folks with MS certainly have a more negative response to it. It’s not when I’ve been drinking though, that I’ve most often been assumed to be drunk. When I’m having a bad day, or I’m especially fatigued, or it’s too warm for me, I can slur my speech. I also drop things, and stumble, and fall, and basically looking like I’ve had way too much to drink. I’ve gotten my fair share of looks from folks when all of these symptoms have happened early in the morning or in the middle of the day. There’s an assumption that I’m drunk. Even if they don’t think that, I’ve still been embarrassed because I know that’s what I look like.
My career and being asked, "So, what do you do?"
One of my most common sources of embarrassment is that I no longer work. It’s such a common question when meeting people. “So, what do you do?” seems to always come up and it’s one that I struggle with. My career was a massive part of my life, and it really defined me. When I get asked about it, I’m embarrassed. I know I shouldn’t be; I know I didn’t choose this, and I’m not lazy, and it’s not my fault. That doesn’t make it any easier though. Losing my career is one part of my life with MS that I still struggle with; it’s a big source of depression for me, it’s always nagging at me, always in the back of my mind. So when this all too common line of casual questioning comes up, it leaves me full of embarrassment.
Talking about embarrassing moments can help
I feel I could go on and on with embarrassing incidents that living with MS has thrust upon me, but I’ll stop for now. Feel free to share your own moments in the comments. These types of experiences are a bit less embarrassing when you talk about them. I have a feeling many of us have a few of these moments in common too!
Do you celebrate your MS Anniversary?