What the MS Community means to me

‘A Community is a social unit (a group of living things) with commonality such as norms, religion, values, customs or identity.  Communities may share area (e.g. a country, village, town or neighborhood) or in virtual space through communication platforms’ – Wikipedia

Community has never been more important than right now. Even if we had known a global pandemic could be a possibility (after all, in all of history, there have only been a handful), I do not think we could have properly prepared for it. The impact on mental health has been cataclysmic, we have lost people to COVID-19, suicide rates have risen, people have felt isolated and some have been scared to go to hospitals for any kind of treatment as they are afraid of catching COVID-19.

Only seeing our loved ones through a screen, no hugging and social distancing have meant the much-needed support from family has been difficult to receive. Turns out, we took these things for granted, but now I would give my right arm for a hug or a hand on my arm. I live alone, so the only hugs I have had are from my rescue dog, Ruby.

I was diagnosed with MS in 2007. At first, I shied away from any MS support community, as it took some time to process my diagnosis. In truth, I was completely overwhelmed, angry, lost and grieving. I was not ready to ask, or receive, help. I shut down and built up unscalable walls. This, in a way, is quite normal, but when I was in the middle of it, I had no idea what I should feel like, what would make sense etc. It was another six months before I finally accepted my diagnosis. A friend of mine contacted a local MS group branch on my behalf and they told her about a newly diagnosed seminar I could attend. This was my starting point.

I was put in touch with a counselor who helped me make sense of my MS diagnosis. That’s when things changed dramatically for me. I realized the importance of having a support network. There were so many things that opened up to me from that point on. I was introduced to a group for young people with MS. We met on a regular basis for coffee and discussed life and our conditions. I was also introduced to a social group who frequently meet up and go out for meals.  I quickly realized the importance of having a support network and now have many MS friends on different places in their MS journeys.

When speaking to other people with MS, you realize we speak our own language. We may have had similar issues at some point or, even if we have not experienced similar symptoms, we can empathize and support in an incredible way. A person who does not have MS can empathize, but not really understand what we are talking about. I have now built up such a huge network of friends who are also living with MS, I feel like we are a family. We are a community. As one friend with MS put it, “I found my tribe”.

Although the MS Community looks somewhat different these days due to the restrictions of the pandemic, it is still there. We are still here. It is important to reach out, to remember there is still hope, that even though it is in a different way, you are supported. Even though, for the most part, our worlds are virtual right now, we need to try to be present. MS is a hard battle, but MS in a COVID-19 world is next level. I know it is such a hard ask but try to stay positive. We will see better times in the future. We just need to hang in there for a little bit longer.

When I need to remember how strong I am and how far I have come, I like to listen to the song Comeback Kid by The Band Perry. Do you have a song that reminds you of how far you have come?

Check out another article from one of our bloggers on the importance of friendships with MS.