Connecting with others can be an empowering factor of life, but it can, at times, be the most challenging first step. Ahead of World MS Day on 30 May, people living with MS share their journey to connecting with their MS community and the sense of unity that comes with it.
Connecting with EVIE
Last issue, we spoke with Evie Meldrum, a 28-year-old Scottish woman who was diagnosed with multiple sclerosis (MS) when she was in her penultimate year of secondary school. Evie writes about accepting your diagnosis and the hurdles she faced before connecting.
Over to you
As with much in life and MS, connecting with others living with the same condition requires balance. Finding that sweet spot where supportive, meaningful relationships bring encouragement and understanding, without becoming ‘too much’. For some – myself included – connections in the MS community can bring challenges alongside benefits.
Whether it’s talking to those who don’t share the same outlook, fearing what meeting someone who has lived with the condition longer might evoke, or feeling like your entire existence has become saturated with illness, connections don’t always foster positive outcomes.
Independent
For almost 10 years after my own diagnosis I had very little interest in reaching out to others. Talking about MS, or hearing about the MS of strangers, felt completely futile. I didn’t want to know anything, I didn’t need to.
I navigated every relapse, every treatment change, every new symptom, every scan, every emotion, and every appointment, solely with the support of my medical team.
I felt like involving the input of others would only magnify the impact MS had on my life. Call it fear, call it denial, call it stubborn youthful ignorance – call it what you want, connection was just something that I absolutely, unequivocally, had no desire to engage in. And I know I’m not alone in feeling that way.
Over the past few years, however, progression has sparked my seeking of connection, and I am reaping the rewards.
Empowered
From challenging my preconceived narrative about disability, to emboldening me to become a better advocate for myself; interacting with other ‘MSers’ has empowered, equipped, and reassured me in ways I hadn’t previously imagined.
For me, part of finding the right balance between the pros and cons has been about finding the means of connection that best suits. I have yet to really feel the benefit that many others gain from support groups, set up with the sole intention of talking about MS.
Forming friendships after meeting at a fundraiser, physiotherapy class, or on social media, feels like a more natural way to develop lasting relationships in which MS is part of the equation, part of the connection, but not the whole story.
Unique
Everyone’s MS is different, everyone’s approach to MS is different, and everyone’s understanding of MS is different; I have found that some interpretations, management plans, and experiences have left me feeling more confused, more anxious, and questioning my own (limited) understanding of MS, or my own approach to living well with it.
So, take advice, exchange experiences and share stories, but remember that no two cases of MS are the same. Focus on you and yours, and find connection, not comparison.
While my recent exploration into the MS community has filled my life with an array of benefits, I wouldn’t change anything. I needed those ten years to allow my diagnosis to settle, and to inform the experience I now share with others.
Now though, I am a proud member of a powerful community connected by our common experience, and feel less alone with my MS thanks to it.
You can keep up to date with Evie by following her on Twitter and at evieWRITES.
Helpline with ALEKS
After receiving an MS diagnosis Aleks’ wife signposted him to the MS Society to encourage him to start a conversation on getting employment advice and support post diagnosis.
But, deciding to connect with others was both an exciting and challenging experience for Aleks to get involved with.
Hope
Finding a local MS group, Aleks was able to connect with many people in his area with MS, but it was building a friendship with a person nearer his age that provided Aleks with hope.
“There was one person who did come that was my age and, although she probably doesn’t know it, she was a huge role model for me in the fact that she was happy and handling the diagnosis and making jokes about it,” enthuses Aleks. “She had been diagnosed a year earlier than me. This made me feel a lot better, just seeing someone that was coping with it.”
Soon, Aleks started his own MS group for people with MS who were still in employment, providing a place for people who worked in the media, as plumbers, in IT and beyond to connect. Aleks adds: “I was actually finding people and seeing all the sorts of things that I could do or be, rather than worrying about all the bad news.”
MS is unique to each individual person, and finding others that you can relate to you can piece together advice and experiences that relate to you.
Aleks advises: “You do need to contact a lot of people until you find someone similar. The internet is good, because you have a bigger spread of people you can touch base with and you can find a group that is more like you.”
Aleks, who now works on the MS Society helpline, has found guidance and connection from Shift MS and a strong MS community on Reddit, but Aleks adds not to feel pressured to join groups. “It is also OK not to be part of a group, just because you have MS doesn’t mean you have to join a group. Phone the MS Society helpline, it is amazing just having the chance for a natter without an agenda can really help.”
Connect with others living with MS by visiting World MS Day, MS Society and the MS Trust.
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