Recovering My Self-esteem After Adapting to MS-related Incontinence

Beth Ullah avatar

by Beth Ullah |

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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. 

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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. 


Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Comments

Cynthia avatar

Cynthia

Thanks for your openness . Been there , done that , bought the tee shirt .... or , in this case, the incontinence underwear !

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Jude avatar

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)

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Maria Mead avatar

Maria Mead

Been there also, thank you!!

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Wendy Back avatar

Wendy Back

You go, girl! I'm very impressed.

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Matt Lane avatar

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.

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Claudia avatar

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.

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José Pedro Matias avatar

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.

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Jan avatar

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.

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Jen Severn avatar

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! :)

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Gardenlady avatar

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.

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