The MS Embarrassment Chronicles

By Devin Garlit

5 min read

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.

Falling

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.

Cancelling plans

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).

Bladder blunders

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.

Drunkard!

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!

Thanks so much for reading and always feel free to share!

Devin

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legsonstrike Member
Devin, you are so good at writing about these things, maybe you should have been a writer and you could still be working! As far as embarrassing, my most embarrassing moment was falling into a table in a restaurant and my husband had to explain to them why I fell,I was so baffled I couldn’t even talk, really didn’t even know what to say or where to begin because I look so normal! Even though I walk with a cane, it couldn’t take the redness out of my face and the tears away. Never been so embarrassed in my life! As far s as sex, my husband still doesn’t get it and doesn’t understand that I have no feeling in most parts of my body but there is a cream that works good for me! I love your articles! Keep writing, you so good at it!
1. Devin Garlit Moderator
 Thanks so much <inline-mention user-id="4040649" username="legsonstrike"/> , appreciate the kind words and thanks for sharing some of your story here too!
sojourner266 Member
OK. Trying again. My heart broke for you, Devin when you wrote about all things embarrassing. I was saddened to hear about your fall in front of your ex and new partner. I used to write a blog for MS called “newbies”. It was for those who were awaiting a diagnosis. I can’t tell you the number of times I received notes from people, who, upon getting their diagnosis were “dumped” by a partner or spouse. I have been fortunate, in that, next February we will have been married 50 years. My wife is such a trooper/caregiver. I owe her my life. My own embarrassment came before I knew what was happening to my body with MS. I was a teacher at our local high school teaching Health Sciences to future Aides and LPNs. I started being incontinent of urine. My first event happened IN FRONT of my students. (I, fortunately, was wearing black pants that day.) It began with warm running down my legs and into my shoes with no warning. In shock, I grabbed a pile of papers from my desk, told the students to start reading chapter 4 “I forgot to give these papers to Mrs. X." I ran out and to the restroom. Realizing nothing could be done at this point. I waited for the bell for the change of classes. I took my seat behind the desk in wet pants, socks, and shoes. After a couple of these events, I started carrying a backpack with and a change of clothing. Unfortunately, I began to be incontinent of both bowel and bladder! That finally took me to a Neurologist. I can’t begin to describe the shock, terror, and embarrassment of that first event that day.
1. Devin Garlit Moderator
 Thank you <inline-mention user-id="3975146" username="david"/> , appreciate you taking the time to share that!
colette4 Member
Devin, I love your articles. I can always relate to what you say, laugh, and cry. Yeah, I remember the falls I had outside and couldn't get up. What happened to those good samaritans that one reads about - there was nobody to help me up. It was quite embarrassing and took me a lot time to get back up and I had to still go to my volunteer job. But, there was a recent episode, which I couldn't believe happened. We went to an expensive restaurant, my choice, for my birthday. It really has been a long time since I have even been outside at all, I'm kinda homebound. We had finished a lovely dinner and husband wanted to go the bar for some fancier drinks. I had trouble even getting to the bar and trying to get on a bar stool. My dizziness started, it was really bad, I thought I was going to fall into a big hole. My dizziness kept on getting worse and I was transferred to sit on a bench to let my waves of dizziness pass - I really wanted to just lie down and hope that I could get off this crazy carousel.
1. Devin Garlit Moderator
 Thanks so much <inline-mention user-id="3959460" username="vvxjr9"/> ! I feel for you, I have been in many situations like that!
dimitri Member
It's amazing how well we lie to ourselves. Before being officially diagnosed I was experiencing MS symptoms, but I continually lied to myself. For the pissing problem I would chalk it up to drinking too much coffee which made complete sense, but I've always drank a lot of coffee.
1. Devin Garlit Moderator
 Thank you <inline-mention user-id="3982525" username="dimitri"/> , I think you a very right about the lying to ourselves bit, even post diagnosis, I am occasionally apt to dismiss certain symptoms because I don't want to think the disease is effecting me.
birdworker1 Member
I was not diagnosed with MS until 3 years ago, at age 60. I have had symptoms of a neuromuscular disorder almost my entire life. Because the MS put me in a power wheelchair almost as soon as I was diagnosed, I never had the experiences I did with the neuromuscular disorder that are outlined above. Not until later, and possibly due to the MS, did I fall and not be able to get up. I did fall, a lot. And it took me awhile to accept I needed braces to keep me from falling. Around 5 years. (I now use a medical alert device, even though I am in my power chair all the time. This is more for my family's sense of relief, than mine.) After the braces, I accepted each successive device more easily. I used the braces, a cane, a walker and, my favorite, a medical scooter. Bladder problems began fairly late in my life and may have been one of the first signs of MS, since it is not common with the other disorder. It got very bad and I now use a supra-pubic catheter. Although I still have sexual thoughts and inclinations, the prevailing equipment for that has not worked for some time. I came home from high school one day to learn my brother was very upset. He overheard a couple of students talk about my being drunk every day, because of the way I walked. At that time in my life I never talked about the neuromuscular disorder. I was 59 when I went on disability. I did have some difficulty accepting this, but I never felt I had made the wrong choice. Younger people must have a considerable harder time with this. MS has worsened my physical condition and taken away cognitive abilities I often relied on when my body did not work. Of the two disorders, MS has been the more difficult to manage.
1. birdworker1 Member
 <a href='http://Lori.Foster' target='_blank' rel='noopener noreferrer ugc'>Lori.Foster</a>- To answer your question, yes, my other disorder, Charcot-Marie-Tooth (CMT), a neuromuscular disorder, shares many symptoms with MS. While they differ in causation and source of symptoms, they share weakening of muscles, poor balance, poor proprioception (difficulty telling where your body is in relation to the world) and probably others. But, as you know, cognitive problems are common with MS. There are around 90 sub-types of CMT. One, Type 6, is being explored as being related to MS. Unfortunately, my one round of genetic testing, which I got many years ago, was inconclusive. Of course, the fact both disorders shared many symptoms made it difficult to see I had both. Shortly after diagnosis, my shoulders began to hurt when using my power assist wheelchair, even at maximum assist. I long ago concluded my body was in frequent rebellion against what I wanted. I have attempted to practice acceptance (not resignation) at those times.
2. Lori Foster Member
 My heart goes out to you, <inline-mention user-id="3937625" username="birdworker1"/> . The overlapping symptoms must make it very confusing at times. I am glad you found our community though. Please know we are always here for you if you simply want to vent or you need support. Hugs! – Lori, <a href='http://MultipleSclerosis.net' target='_blank'>MultipleSclerosis.net</a>, Team Member
nwhite Member
You do so well explaining symptoms we all go through daily or sometime through this daily unknown. I recently filed for disability after battling for 4years trying to continue working as it's my passion. I'm a nurse and have never considered it work. I realized I needed to file for it as I have become a liability. I never know till day of if I'll be able to work and if so will I be able to do a full day. Along with my cog fog, forgetfulness even getting lost on normal commute such as going to my doctor office, the blurred vision, excruciating pains and spasticity and numbness. The list can go on and on. The quality of life has gone out the door. And now I received denial letter from disability stating I'm to young and able to still work. I didnt know you had to be a certain age to be disabled and my files wherent even collected from my doctors that I've been seeing for 4yrs. They based it of 2 dr notes. Really how can you do that to someone with such a disability. It took everything in me to even walk into the disability office to ask for help. I'm the one suppose to be helping others and caring for others. Thankfully I have a husband that helps me is always watching over me to make sure I'm not leaving stove on and so forth as it happens all the time. He has now taken over majority of things over at home just because it's not safe for me to do. The cognition is just not there as it use to be. I'm sorry for ranting wasnt my plan. Thank you so much for your articles they are great. You sure know how to write.
1. Devin Garlit Moderator
 Thanks so much <inline-mention user-id="4057984" username="nora"/> . I'm very to sorry to hear of your situation. The disability system is terrible and especially harsh to those it considers young. I highly recommend looking into a disability lawyer, it is much more affordable than most people think. They can make a tremendous difference in filing (sometimes, just the language they use when filling out the forms makes the difference).

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