The right support is essential when you have multiple sclerosis

MS patients deserve solace whether their experiences are positive or negative

Benjamin Hofmeister avatar

by Benjamin Hofmeister |

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I didn’t seek support immediately after my diagnosis of multiple sclerosis (MS). To be fair, MS was just an annoyance to me at the beginning. It was simply a set of symptoms, and I was initially happy just to have an explanation for them. To be really fair, there’s a small chance I might’ve been a little arrogant. I thought there was no way I’d end up like others with the disease. I’d work extra hard and not “let” myself get any worse than I was.

MS is the great humbler. Greater even than my ego, apparently. After a bout with depression, which I thought would never happen to me and that I could overcome by sheer will, I found myself seeking support. I looked for and tried out both online and in-person groups.

At first, these attempts didn’t go well.

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I didn’t want sympathy. I was already quite talented at feeling sorry for myself without any help. I was looking for empathy and honesty — brutal if necessary — and I wanted them from other people with MS.

Instead, what I got was:

“Welcome to our little group. Feel free to ask anything.”

“Thank you! That’s exactly what I needed to hear. I’m having awful bowel and bladder problems, to the point of having to keep an empty bottle and a roll of toilet paper in the truck for my drive to work.”

“Oh, dear. We don’t like to talk about negative things here. That’s really something you should ask your doctor about.”

“I’m planning on it, but as awesome as my doctor is, he doesn’t have multiple sclerosis. I thought I’d ask someone who does.”

I didn’t go back, and it was several years before I tried again. Fortunately, I found the right group for me and am better for it.

Reevaluating what support looks like

I know I can be a bit brash, and I’m aware that not everyone is. I really do make a conscious effort to gauge the environment before opening my mouth. In my defense, the environment in this case was a multiple sclerosis support group, where I assumed there’d be support.

I understand wanting to “accentuate the positive,” but with MS, you can’t “eliminate the negative.” Pretending the negatives of MS don’t exist only creates another negative: self-doubt. “No one else seems to have crippling fatigue, or be depressed about it. What’s wrong with me?”

We may not be able to eliminate the negative, but we can minimize it. The way to do that is to talk about it — all of it — and the best people to do that with are the people who experience it, too.

If your multiple sclerosis support group doesn’t want to talk about multiple sclerosis, including the embarrassing, unpleasant parts, maybe you both need to reevaluate what “support” means. For me, it means a willingness to be open and honest about our disease, including the taboo parts.

I don’t like this show and didn’t want to see it, but I have a ticket and have to sit through the whole thing. If I’m going to talk about it, I’d prefer to talk with the person sitting next to me. I’ll try to keep my eyes open and hold your hand through the scary parts if you’ll try to do the same for me.


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

Brenda Groleau avatar

Brenda Groleau

I appreciate your writings on MS; especially because you comment on the 'taboo' subjects. Unfortunately I cannot use a bottle for the embarrassing times but fortunately I have a very understanding husband who helps me through them.

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Thanks Brenda! I'm just trying to talk about the things I wish someone had talked about with me 10 years ago.

Ben

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Amanda avatar

Amanda

I’ve been diagnosed 9 years and I’ve never sought out a support group…and after all this time, I think it might be time that I do. All support groups are not created equal…sounds like I might have to shop around for the right fit. Thanks for the article.

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Thanks for reading Amanda. Yes, the right group (for you) is....refreshing and has changed things for me. Mine is:

http://www.mskurmudgeonskorner.com/

It is not for the faint of heart, but it is the right one for me.

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Ruth Pearl avatar

Ruth Pearl

I've had the same experiences with so-called support groups which weren't really support groups. They were informational but no one talked about they're own problems with MS. And I have been very hesitant to try any more groups. It's been 13 years since my diagnosis and I still have very little support..

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Hi Ruth! The right group is the one that fits you. Mine is:

http://www.mskurmudgeonskorner.com/

It is right for me, but definitely isn't right for everyone.

Ben

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Susan avatar

Susan

I've been part of a local support group off and on for some time. It has had its ups and downs over the years (from my POV). During Covid, zoom meetings eventually petered out. When getting together again seemed possible, a bunch of us restarted meeting. I have started being responsible for setting up meetings, contacting people etc. Some of our older group members cannot attend in person any longer, so we have been attempting to have hybrid (zoom/in person) meetings. It's not going as well as we would like. Some of it is technical -- i.e. we use my computer for zoom, but laptops have smallish screens and it is difficult for everyone to see the people on the screen. Also, talking over zoomers...

If anyone has ideas / experiences to relate on making this work, we could certainly use the help. Thanks!

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Hi Susan! I like the anonymity that comes with an online group, (not that I'm exactly anonymous....but I could be), but in person can't be beat either. I can't help with the zoom issues. I have them too.

Ben

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Patricia McGrath avatar

Patricia McGrath

Just wanted to say thanks. Just as there is shortage in all fields of life I wish those with ms can contribute with professionals. Health providers should be aware that we are all learning together. Share both the good 😊 and the horrible support we have experienced. How to collaborate so we can address the whole picture of our body: I am pulled and stretched in many different directions. Literally.emotional,physically and spiritually. I wish to be wholeheartedly Holistically free and energized!
Patricia, primary MS 2015 Myelopathy/ 🧬 makeup? Many kinds of support helps heal the body.

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Thanks for the comment Patricia! You are so welcome.

Ben

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Andréa avatar

Andréa

Benjamin, Thank you so much for sharing your experience and the url for your support network. I've been rather infuriated to discover that there are no support groups in my area, even though we have higher numbers of MS patients due to northern latitude. I have had some therapy, but it really hasn't been cutting it for me after losing use of my dominant hand this last year and my entire world falling apart due to the disability. Your group sounds right up my alley - honesty, empathy and laughter. Having people who understand what you are going through can really make all of the difference. Thank you, thank you!

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Thank you Andréa! For reading and for the comment.
Losing use in your dominant hand is more of a blow than people realize. I used my non-dominant one throughout my life and was proud that I could even if I was never truly ambidextrous, but I hate being forced to by MS. Hmmm great future column idea!

Ben

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