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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