Diapers.
Really? Ugh!
Maybe my fellow Multiple Sclerosis support group member had no problem referring to incontinence products as “diapers,” but that term struck a nerve with me.
Choice of words matter, and I was not having it or hearing it.
Sure, I probably am a little extra-sensitive right now considering that I am struggling with my own MS-related incontinence issues. I am a tad overdue for my Botox injection and am living with a concern I had before I switched to this twice-each-year treatment to control my MS-induced neurogenic bladder.
This condition is where the nerves carrying messages back-and-forth between my bladder and spinal cord and brain aren’t functioning as they’re supposed to. The Botox helps to control my levels of frequency and urgency to use the bathroom.
I’m quickly learning that my concerns were correct and this prescription medication only lasts for so long and needs to be re-administered on schedule. As a result, I am wearing protective underwear – a brief – to help me maintain my dignity as I await my next Botox treatment.
But I do not wear diapers. So stop saying that.
Living with the effects of MS
I didn’t just up and say I wanted to have Multiple Sclerosis. Likewise, I didn’t push my way to the front of the line to get a neurogenic bladder. These are the realities of what I’m living with, so why should I be ashamed of the things that are out of my control?
What is under my control is the way I talk about my realities and what I do to continue maintaining my quality of life. Am I proud that I need to wear a brief to help me through the transition between my Botox treatments? Not necessarily. But what I am proud of is my ability to do what I can to help myself (and my husband, Dan) live my best life with dignity and respect.
Let’s face it: I haven’t walked in over 20 years and need Dan’s help to stand and transfer every time I use the bathroom. This takes extra time so, leaks can and do happen from time to time.
Yes, I was a little uncomfortable about putting this personal information out there for the world to read, but I quickly realized there is no shame in being honest about what I’m living with. What’s more is that I saw that talking honestly about these kinds of issues will help other people to see that they also should have no shame in taking charge of the situations that were beyond their control.
Such discussions help to make people more comfortable with engaging in these difficult conversations and empower them when dealing with their MS realities.
My multiple sclerosis has changed me. It has reduced me. Being honest, it always seems to have an upper hand. That is why language means so much.
I don’t wear diapers. Babies wear diapers. I wear briefs. Are these essentially just words? Am I just splitting hairs? Maybe. But this preserves my dignity.
By the end of our support group, people saw that there is no shame in wearing a brief (because it truly IS NOT a diaper) when living with a neurogenic bladder. This merely is one more tool that will help give those of us who are dealing with neurogenic bladder the independence we need to maintain our quality of life.
What about you? Are there any words or phrases people use that bother you when it comes to living with your MS?