Support This: My Journey With Multiple Sclerosis and Support Groups
Support groups can be safe harbors. They can be powerful places. There you’ll find friends, shoulders to lean on, or someone who will actually listen. How rare is that, when we need those things the most?
Support groups can be upbeat, or downbeat, or can have little if any beat at all and slowly fade away…
Support groups can also be cliquish, petty or even drama-filled. These are rare, thank goodness, because who needs drama when you’re already dealing with a health condition, right? Just, why?
The “why” is because all of these support groups of many stripes are made up of people. People can be powerful, people can be petty, people come in 1,001 varieties. Support groups take on the character of their people: the members, the leaders, the whoever shows up and contributes. They each have their own vibe.
I’m not an expert to be saying all this. I’m just someone who has been in and out of support groups for 30 years. In all my time with multiple sclerosis, I’ve seen a lot of support groups, though probably not as many as a lot of long-timers. I wish I’d participated in even more, met even more people like me, because a good support group is such a practical lifeline. It’s a fire in the hearth on the longest night of the year, and in good times it is a wind in your sail because you know there is a group somewhere that knows you’re not lazy, not “crazy,” and deserving of full dignity and respect.
I’m a guy, and like a lot of guys, I tend to bite down on my feelings. Then, there have been experiences that turned me off of support groups for a time. But one of the biggest enemies for me and others like me is isolation. When mobility, fatigue, depression and a host of other symptoms rise up, so do the barriers and isolation from the rest of the world. In times like those, getting to support group meetings became more of a stressor than a safe harbor.
So, when I learned of online support groups, I was super excited and hit the on-ramp eagerly. We’re talking the stone ages here, when dinosaurs roamed the earth with names like America Online, CompuServe, Prodigy. I homed in on the multiple sclerosis areas. I’ll never forget the day (1993, yikes!) when the very first treatment for MS, Betaseron, was approved by the FDA. It was big news on the stock market, but to truly appreciate how momentous this was, I wish I could show you support group posts from that day, when we raced to our multiple sclerosis bulletin boards and poured out our hope and elation. There were tons of ALL CAPS and !!!!!! and ‘I’m typing this through tears of joy – can’t stop crying’ posts. It’s also where we went in the months and years afterward when the costs of the drugs sunk in, and everyone realized that it was a treatment but not that kind of treatment = not a cure. And we continued on, in our support groups, together.
The many years since have brought support groups in the form of robust websites, blogs, social media and podcasts, fostering community and support and expanding accessibility. Each platform with a different character and energy, shaped by the amount of investment put in by hosts or whether guidelines were maintained, but also by the investment of users in terms of their time and love. Sadly, most of those communities are now only happy memories, but they provided the support that was needed and a template to the networks and communities that came after.
One of those passing-the-baton moments is happening right here on The Mighty. MS Connections, once the large and popular support site affiliated with the National Multiple Sclerosis Society, is migrating to the new Multiple Sclerosis Connections at The Mighty. Its resources will be available on an easy-to-use social media platform that is growing its membership and expanding its features. But the most important part is what the members here already offer to each other in terms of support.
This community is that powerful place with no drama, one that is accessible, active and diverse. Here the new Multiple Sclerosis Connections can really take root and become something Mighty indeed! Come lend your strength to our community, as we offer you ours. Please take a moment to introduce yourself: go to https://themighty.com/groups/multiplesclerosisconnections and on the left, click Create New Thought. Share something about yourself or your journey, or just say hi.
We’re glad you’re part of our support group. We’ll build up one another, and together build a group that’s Mighty!
From Our Community:
Getty image by Rudzhan Nagiev.
PPMS stripped away the surface of my life, and left behind a new one not better or worse, but definitely different. I'm not good at much, but I'm great at surviving. Marrying my wife was the one thing I did extremely well. She's the wonder of my life.
themightyjohn