When I was first diagnosed the neurologist urged me to find a support group of fellow diagnosed people. That was the last thing I wanted at the time. I preferred denial, living my life as though MS didn’t exist, not having to talk about it, I preferred not being there!
That has shifted. Years later I find that I feel a kinship and sense of camaraderie with fellow diagnosed people. We don’t need to talk about symptoms or medication or anything to do with MS, I just like them, know they have dealt with a lot of things I have, and here they are, we are all survivors at this point! I am much more ready for a support group.
Results of studies say that support is not one-size-fits-all. We are unique, and we experience different needs at different points in our journey. We can make our MS our own-do what works for us.
Here are some forms of support groups.
Traditional support groups--The most obvious sort of support group is one of people with MS who get together weekly or monthly to discuss issues.
There are studies that point to the help of groups that meet in person, and this provides a boost to many people by providing not only camaraderie, but helpful information (https://www.scopus.com/record/display.uri?eid=2-s2.0-77956650152&origin=inward&txGid=0, http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3249770/).
Some people are not reached by this method, though. One group that is hesitant to go is men who are diagnosed (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4338643/).
Even when people do participate, it isn’t always helpful. One small study showed that participants felt less robust emotionally after an 8-week support group session (http://www.ncbi.nlm.nih.gov/pubmed/14760957).
What about those of us who need a different approach?
Online support groups--The new approach is online support (http://her.oxfordjournals.org/content/16/6/693.full).
There has been a bias against this. One service provider that I interviewed said that this is not the quality of support that in-person support groups provide.
Nevertheless, there is a growth of online and social media support groups for all sorts of challenges, including MS.
The online group that I enjoy is through the yoga regimen known as DDPYoga. People who buy the program of DVDs are part of a large and active online community—and a subgroup is for MS diagnosed people. This is a small group which includes a man, and several women. Some of us check in weekly, some a few times a year. If one of us has a question about a regimen or new treatment someone else has done research on it and can tell us more. Positive support is a given in our interactions. It is my sort of group.
Online referrals--There is a site that gives links to supports for people with MS (www.healthline.com/health/multiple-sclerosis/support-groups#Overview1).
Books--I constantly am being referred to books by friends with MS. The first support I found involved two books. The first book that I read (The MS Recovery Diet by Sawyer and Bachrach) gave me an unexpected feeling of camaraderie and kinship with people whose stories were in it. The second was a book which I put together (Beyond MS Your Best Life) by interviewing 20 people with MS. Their stories taught me coping skills and gave me a sense of being in this with other people who had backbone and humor to spare.
These are the sort of support that I have come across. If you have others to share, I would like to pass them on in the next blog, which will be my final one for the next few months. Next week I will share the results of my mini-trial of a ‘mice-and-MS’ study that had great results for mice—I want to know what happens when humans give it a go.
Till next week!