MS AND PEER SUPPORT

Having a chronic incurable illness like MS can be a lonely experience. As much as those who don't have it do their best to understand it, only other MSers will truly 'get it'. I was offered three sessions with a counsellor after I was diagnosed but I remember sitting and wondering what do say to this nice woman who doesn't have MS but is here to help me? Maybe I just wasn't ready, but I was curious to meet other people around the same age. To see how they were coping. I did eventually.

What do I mean by peer support? It can come in many guises but to me it means feeling supported by another person and other people in a similar situation as myself.

In pre-pandemic times, I was lucky enough to be able to attend a physio-led exercise class in the Midwest MS Society. What motivated me the most was being able to go for coffee afterwards with some of my fellow exercisers. It's easier to do lunges and squats when you have a nice coffee and chat to look forward to afterwards. I relished spending time and learned a lot from these women. There is something soothing about spending time with others going through similar experiences to yourself. Even if it's just a chat about the weather. If I said I was feeling really tired or fatigued, I could unselfconsciously share this knowing I would be understood. With the exception of a close friend or partner, I wouldn't say normally say it without feeling that I sound like a moany grump.

It's also good to get different perspectives. Everyone has a different approach and way of dealing with their illness. This exercise group moved online two years ago but we started doing the odd ZOOM meet-up. Thankfully, modern online technology came to the rescue.

The online world is a great resource for interacting with other people with MS. I came across Shift.ms a few years ago when I was at home from work with a relapse waiting for the steroids to work. Feeling frustrated and powerless I posted in a Shift.ms forum. I can't remember exactly what I said, probably an emotional rant about having to suffer the purgatory of yet another relapse. A lovely woman based in the south of England responded soon after. Again, I don’t remember exactly what she said but her words felt like a warm hug.

Currently, I am a member of a WhatsApp group for some of us who write for MS and Me. It is a great place for all kinds of advice, support, sharing experiences. A direct source of advice on all sorts of things like social welfare entitlements, navigating airports etc. We support each other as the best sort of advice is from someone whose been there already, someone with MS.

Dublin MS Meetup Group is for people with MS who want to connect with others. They have been meeting online via Zoom since the pandemic and there are 250+ members from all across Ireland. Check out their Meetup page for more information on joining https://www.meetup.com/Dublin-Multiple-Sclerosis-Group/.

*This group is organised by people with MS for people with MS and is not part of MS Ireland.

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