This blog has only been up a month, but you may have gathered by now that I’m a tad bit sarcastic and cynical. That doesn’t mean I don’t take my MS seriously. In fact, you could say I take it as seriously as it takes me. If it treated me like everything was happy and right with the world, I would return the favor, but it doesn’t work that way. My MS isn’t your MS so experiences vary, but on the whole, I am not thrilled with this disease and don’t much feel like pretending I am. As a result, I’m not a good fit for the MS forums and support groups out there, that for some reason, don’t want to talk about MS.
“So, I’m having these awful urinary and bowel incontinence issues. Can anyone tell me how to deal with that?”
“Oh dear, we try not to discuss anything negative here. You should ask your doctor that sort of question.”
“My doctor is awesome, but he doesn’t have MS. I thought I’d ask….oh, I don’t know….other people with it!”
“Just tell yourself, ‘I may have MS, but MS doesn’t have me’.”
“Oh it has me all right. It occasionally ‘has me’ pulling off on the side of the highway to poop in somebody’s field. How’s that for negative?”
It probably comes as no surprise that I didn’t go back and had to search high and low for a group where I fit in and could ask any and every thing I wanted and needed to about multiple sclerosis. I found it in a little place called Kurmudgeons’ Korner. Rather than fumble through a description, here’s an excerpt from the landing page.
Kurmudgeons’ Korner is a forum for people who have been diagnosed with multiple sclerosis. (Sorry, no friends, family, caregivers or limbo-landers; just people with an MS diagnosis.) We’re relaxed and informal. We operate on the principle of mutual cooperation and respect. We talk straight, but we also have a wicked sense of humor. Most importantly, we’re a private forum; Google can search most places on the internet, but not here. What you say here isn’t findable. You’re safe with us.
We’re a unicorn-free zone. We’re not into cutesy bunnies and hearts and flowers and rainbows and unicorns. MS is a crappy disease and we’re dedicated to talking straight about what it means and how it affects our lives — except, of course, when we’re laughing so hard it hurts, which is most of the time. We don’t do platitudes. If you’re inspired by those glossy ads saying “I climbed Mount Everest because I take (insert drug name here),” we’re not for you. If you’ve ever said “I have MS but MS doesn’t have me,” you need to find another forum — unless you’ve repented or you’re ready to consider doing so. All that said, there’s probably not anywhere on earth you’ll find a group of people who will understand you better, support you more, or make you laugh harder.
https://mskurmudgeonskorner.com/
It’s not for the faint of heart and no, that isn’t meant as a challenge. A lot of people think they want straight talk about MS, but really don’t. It’s a negative disease, so if you ask a question, there’s a good chance that the answer won’t always be a cheery one. The people aren’t negative though, just honest and when it comes to MS, honesty really is the best policy. If that or any of the above appeals to you, give it a shot. You’ll be glad you did. I know I am.
4 replies on “MS Support Groups”
Thanks Ben. One of my office employees is dealing with a less progressive form of MS and will hopefully find this forum beneficial as well.
You’re a good boss for thinking to share that with an employee who might need it. There’s a real comfort in being part of a group. Even if it’s a group you never wanted to be part of. We often greet newcomers with, “Glad you’re here, but sorry you’re here too”.
Ben
I understand your desire to find a support group of the blatantly honest variety. Myself I try to find something ‘middle of the road’ in support groups. I think it may be the Buddhist in me. I also found your example of an incontinence question exchange pretty funny. I probably could have given you some advice (whether good or not is debatable), and a story as well… I had an experience at work (I work/worked in a law firm) where I was at work on my powerchair, and I had an episode of explosive diarrhea and couldn’t get to the bathroom in time. First I had to get down ten floors in a small elevator to the ground floor, then take the freight elevator to the basement where there are locker rooms and showers. It was either that or take the buses—yes, plural-–ten miles and two hours home to my studio. I had to shower AND wash my pants in the shower because they were the only pair I had with me—the underwear was collateral damage that took the biggest hit and didn’t make it. I was lucky I had a towel in one of the lockers, because I also had to dry my pants using the hand dryer on the wall. It all took me about 3 1/2 hours, and I still had to go back to work and later home on the bus in damp pants because well… a hand dryer can only do so much. My advice as a takeaway from this… stash a change of clothes in different places you usually frequent: at work, in the car, etc. Also a hair dryer, wet wipes, a towel, and dryer sheets like Bounce or Febreze. And always keep a supply of Immodium close by.
LOL, we’re sure not “Zen” at the kurmudgeons’ forum, but it’s not as though we’re the militant wing of MS support groups either.
I can’t roll in the floor right now, but I shook in my recliner laughing at your story. How did something that felt so devestating at the time become something we can make light of now? The first time it happened I felt like I had lost a part of my dignity. Did I though? Was it just my pride that took a hit or can one’s sense of dignity change over time? (in our cases it shifted without a clutch) Does having a “new normal” mean new boundaries for dignity? Hmm, I’m going to have to think about this and maybe write about pride, dignity, and ego. You should too. There’s no way we’d have identical thoughts on it.