Recovering My Self-esteem After Adapting to MS-related Incontinence
Without hesitation, I would say that my bladder and bowel issues have been the hardest symptoms to manage and overcome following my MS diagnosis. It comes down to one thing: the fear of having an accident in public. The embarrassment. The shame. The judgment in other people’s eyes.
It’s not pleasant to talk about, I know. It’s taboo. It’s like a silent shadow following me around, always lurking in the back of my mind: “Where’s the nearest toilet? What is my plan if I can’t get there on time?”
To go from being fully mobile to paralyzed from the waist down within months was mentally and physically shattering. Going from being a married couple to also being a patient and a carer felt devastating. I felt as though I had lost all dignity. I couldn’t get to the bathroom or clean myself alone. It was an incredibly tough time for both of us.
As my paralysis ebbed and I began to recover, my dignity began to slowly return. I felt human again.
Yet each public accident chipped away at my confidence and self-image. I initially resisted the need to use incontinence underwear, which made me feel like less of a woman.
The turning point happened while I was at a Black Stone Cherry concert at Caerphilly Castle in South Wales, U.K. The venue had only one port-a-potty for disabled concertgoers, and it was occupied for 10 minutes. I knew I wouldn’t make it, so I snuck behind a wall out of view. Luckily, I had packed a change of clothes. But it was still humiliating.
For me, what changed that day was that I decided to ask myself, “Am I going to let this ruin an amazing experience?” No, I wasn’t. That was the catalyst for the shift in my attitude.
Last week, I left the house from 7 a.m. to 11 p.m., embarking on a four-hour journey both ways in a bus full of people to see “Les Misérables” for my husband’s birthday. I knew it would be challenging for my MS, and I was particularly worried about my bladder. The heat of the bus was especially triggering. In situations like that, I must wear provisions, which I did.
Our limits with our chronic illnesses differ, and the horrible part is that they change hour to hour, minute to minute. When you’re in a city four hours from home, you have no choice but to use things you may have previously rejected. This time, I was committed to avoid letting my bowel issues affect me, as we were only allowed to use the bus’s bathroom to urinate. I didn’t see anyone else use the toilet. That was all I thought about the entire time. I had taken precautions, but they still made me feel less womanly.
Still, I did it, though. Without an accident. Without a problem.
I believe that perspective is important. Sadly, the more these things happen — particularly bowel accidents — the more I’ve gotten used to them. When they do happen, they’re just another type of situation that I’ve learned to handle. And now I know that I can do it.
My perception of dignity and self-image has completely shifted since I was diagnosed. It’s taken time, but I’ve learned that being prepared is necessary. This includes having a change of clothes and wearing incontinence underwear, or at least having them in the car when needed.
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Cynthia
Thanks for your openness . Been there , done that , bought the tee shirt .... or , in this case, the incontinence underwear !
Jude
Dear Beth, It always make me feel less alone, reading other MS peoples experiences. I also find that part of it very difficult to cope with. I don't drink very much at all if I know I'm going out (not the best thing to do), I invested in a shewee and as I live in the countryside, I can usually find a private place to use it. My courage is in my assistance dog, we go out in my electric wheelchair together every day and enjoy the fresh air. I wish you well, stay strong :o)
Maria Mead
Been there also, thank you!!
Wendy Back
You go, girl! I'm very impressed.
Matt Lane
Thanks for sharing, having had a series of accidents last week, 1 big outside when walking with my wife and two smaller ones in the house, Its good to talk and share, I am going back to the incontinence team to look at further options other than medication for bladder and trans anal irrigation for bowels which I currently use, but now needs to be looked in to again as it is getting worse. thanks again for sharing, you are not alone.
Claudia
Yes, the bowel inconstinence is what keeps me at home. Bladder problems are less of an inconvenience as I've put the pride aside and now have gotten use to incontinence briefs and pads - I don't go out without them. However, if the bowel acts up everyone in close proximity would know. It's my biggest fear right now.
José Pedro Matias
Thank you for the testimony overcoming a taboo, as you said.
We all have our taboos but we don't always overcome them.
Jan
I use the “pads” daily and nightly now. In the past, I’ve had awful and mortifying bowel issues. The only thing that keeps them at bay is Imodium. Luckily, they’re rare now.
Jen Severn
One day early in my relationship with my (now) husband I had to wait too long in a queue for a public toilet. I sat there feeling miserable, mortified and a little damp, while he went off to Target to buy me a fresh pair of knickers, coming back ten minutes later with dry underwear … and a big bunch of flowers.
Yes, a supportive partner is invaluable. But about eight years ago I started self-catheterising and the peace of mind afforded by knowing my bladder is empty ... priceless! :)
Gardenlady
Yes, I experienced theses issues too. It’s still terrifying for me, even with precautions in place. There isn’t enough that can be done for a bowel accident in public.
Jeffrey B.
I'm in the U.S., where changing your diaper in a public restroom is one of the most awkward, humiliating experiences I've ever had. Adult changing tables are few and far between; changing yourself usually involves laying on a nasty restroom floor and praying that no one walks in on you.
Jeffrey B.
All of this sounds so incredibly familiar. *HUGS*. I was diagnosed with relapsing-remitting MS in 2017, and at the time I'd been having symptoms for over a decade. I progressively lost my bladder continence early on, going from dribbles and occasional accidents to zero bladder control; I've been dependent on diapers ever since. For a long time a combination of the medications I was taking and slowed intestinal motility due to the disease held bowel problems in check; but I'm now in the midst of losing my bowel control, too. Diapers contain it, but when you have a bowel accident in public, there's no hiding it; everyone around you knows. It's absolutely terrifying, and the level of shame is so, so much deeper than with pee accidents. I'm having a very hard time with it, but I'm trying to avoid letting it turn me into a hermit. It just makes you want to hide away and never let anyone see you again.