One of the best pieces of advice I got since I was first diagnosed with MS back in 2008 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 who will have more advanced MS than you and many have permanent and, in some cases, very severe disability. If you think this will upset you then I’d advise you to try something different.”
A scary look at my future?
At this stage I was working full-time, was very physically active and had a thriving social life. I wondered whether I was going to be seeing “my future” and whether I’d 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.
There were a lot of things about that meeting that were hard. It felt confronting. It made me feel anxious about my future. It made me feel guilty that my MS was “better” than many of the people whom I’d met. However, the co-ordinator’s warning had allowed me to prepare myself and, while I never went back to another coffee morning, it didn’t put me off exploring other options that would enable me to meet people with MS.
Tips on Befriending Others with MS
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 be sitting and chatting, find out if there are any activities in your area specifically for people with MS, for example art therapy, fitness classes, research days or fundraising events.
The waiting room chat
When I attend MS-specific clinics or rehabilitation sessions (whether at the hospital or in other settings), I’ll often chat to the people in the waiting room. This not only makes the time go by quicker, but it’s also a great opener to be able to swap experiences.
Find people with similar interests
Never assume you will automatically have lots to talk about with someone else who has MS. Yes, sharing a condition means there’s a bunch of topics to fall back on, but the people I connect with the most are the ones who share similar interests and circumstances to me.
Everyone’s MS is different. Learn from others yes, but don’t compare yourself to them. We are all individuals, with or without MS!
Ask and learn
Don’t be afraid to ask questions. In my experience, people have always been very willing to help and generally don’t mind sharing stories about topics across a very wide-range: financial support, symptoms, healthcare teams and medications. 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 feel 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 been able to learn how they’ve coped in situations that I may someday have to face in the future. I’ve been able to see first-hand that it’s possible to do many of the things I want to do, even if my MS advances. And real life meetings are so rewarding. I find it much easier to be open about sensitive topics when I’m chatting to someone face-to-face because it’s a more personal conversation than doing so online. I also feel confidentiality is greater in person than if you’re posting something on social media or on a forum.
Meeting others with MS has provided me with hints, tips and advice about living well with the condition. But most importantly, it’s given me friends who just “get it.”
And those friends are now some of the best friends I have!
UK/MED/19/0101 May 2019