The right support is essential when you have multiple sclerosis

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.

Recommended Reading

June 1, 2023 News by Margarida Maia, PhD

Stress in MS linked to worse disability, more burden in US survey

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.