Spending time with friends who "get it" can mean so much when living with multiple sclerosis (MS).
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When I was diagnosed with multiple sclerosis in 2008, one of the best pieces of advice I got was just before my first face-to-face meeting with other people with the condition. It had been some months since I'd been diagnosed, and I was planning to attend a coffee morning run by the local group linked to the UK's MS Society.
The coordinator for newly-diagnosed people said to me:
"I want to make sure that you’re mentally prepared to attend this coffee morning. You're going to meet some people with more advanced MS than you, and many have a permanent and, in some cases, very severe disability. If you think this will upset you, I'd advise you to try something different.”
A scary look at my future with MS?
At this stage, I worked full-time, was very physically active and had a thriving social life. I wondered whether I would see "my future" and have anything in common with the people there. I began to reconsider whether I should go, but the pull of wanting to meet other people with MS was stronger than my fears.
In the meeting, there were a lot of things that were hard to take. It felt confronting. It made me feel anxious about my future. It made me feel guilty that my MS was "better" than the more advanced stages I'd seen with many of the people I'd met.
However, the coordinator's warning allowed me to prepare myself. While I never went to another coffee morning, it didn't put me off exploring other options that would enable me to meet people with MS.
5 tips for befriending others with MS
1. Seek out support groups, meet-ups, and activities
MS charities often run support groups and meet-ups. That’s a good starting point, but if you don’t want to just sit and chat, find out if there are any activities in your area specifically for people with MS. Art therapy, for example. Or you could look for fitness classes, research days, fundraising events, etc.
2. Try a “waiting room chat”
I often chat with the people in the waiting room when I attend MS-specific clinics or rehabilitation sessions. This not only makes the time go by quicker, but it’s also a great opener to be able to swap experiences.
3. Find people with similar interests
Don't assume you will automatically have lots to talk about with someone else who has MS. Yes, sharing a condition means there are a bunch of topics to fall back on. Still, the people I connect with the most are the ones who share similar interests and circumstances to me.
4. Never compare your MS symptoms or general health
Everyone’s MS is different. Learn from others, yes, but don't compare yourself to them. We are all individuals, with or without MS!
5. Ask and learn from those in the know
Be bold and ask questions. In my experience, people have always been very willing to help. Generally, they are okay sharing stories about a wide range of topics - financial support, symptoms, healthcare teams, and medications, to name a few.
Think about it: if you can’t ask someone else with MS, then who can you ask?
Why it helps to make friends with others with MS
Although that first meeting made me anxious about my future with MS, the more people I've met with the condition, the less scared I've become. Why? Because I've learned how they've coped in situations that I too may have to face someday. I've seen first-hand that I can still do many things I want to do in life, even if my MS advances.
And real-life meetings are so rewarding. It is much easier to be open about sensitive topics when chatting face-to-face than online. Confidentiality is also more likely in person than if you're posting something on social media or a forum.
Meeting others with MS has given me hints, tips and advice about living well with the condition. Most importantly, it's given me friends who "get it."
Those friends are now some of the best I have!
NPS-IE-NP-00234 March 2023