4 Things I discovered from attending a Fibromyalgia Support Group


Last week I attended a patient support group for people with fibromyalgia.  Arranged by the occupational therapy department at the pain clinic, it was an introduction to a six-week course, giving us the opportunity to decide whether it was something we would like to attend. 

I immediately felt a bit of a fraud when I went into the room. I was the youngest there by a few years and from what I could gather from the various conversations taking place, the vast majority were either retired or not working.  Many of them were using walking aids - crutches, walkers or walking sticks.

The aim of the group was to teach us more about the condition and how to deal with it, with a focus on pacing and slowing ourselves down, as well as our mental health and moods.

When the opportunity to attend was mentioned, I automatically said yet because I didn't - and don't - want to be seen as turning down any help that is offered to me.  That said, my initial thoughts were that it wouldn't be for me because I really don't like being in large groups, especially with people I don't know.  

The group lasted two hours and here's what I took away from it:

1 - In a large gathering like this, there will always be at least one or two people dominating the conversations. They will answer first, someone else will attempt to pipe up when they pause and they will continue to talk over them until they stop.

2 - Using a walking aid of some description acts as a visual pointer to others that you need some assistance and are experiencing some mobility issues.  Without them, people aren't as helpful and are almost unwilling to listen to your experience.

3 - There is a strange sense of competition between people. Sharing the symptoms they have and comparing it to someone else's. 

4 - Negativity was abound.  Some people will always find something, anything, to be negative about. For example, the upcoming group times were given and the lady next to me started to complain about the dates and times being inconvenient to her and wanting to know what we were supposed to do if it rained or snowed.

Overall, I'm glad I attended the group but I decided that ultimately it wasn't for me and when we were asked if we would attend the course, I declined.  I was able to speak to the lady leading the group to explain my reasons and she was very understanding, particularly when it came to the points about negativity.

For now though, despite what feels like overwhelming exhaustion at times and the numerous new symptoms that come along, I'm feeling OK. My mental health is the best that it has been in a long time. Even the days when my symptoms flare, they are more bearable. 

That's not to say that I wouldn't be open to attempting a group again in the future,  I would. I am sure that there is more that I could learn about fibromyalgia and how to deal with the different symptoms. Who knows, with a different group of people come different vibes. For now, though, it isn't for me.  

What are your thoughts on support groups? Have you ever attended one, did you find it beneficial? 

5 comments

  1. I am new here, so I don't know the entire story but I am glad I found you. I suffer from chronic migraines....not much else to say about that. Funny how pain can bond people and by funny, I mean not at ALL funny. :)

    All points you made about groups I could relate to completely. I was nodding my head the entire post.

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  2. I've never been to a support group, I was offered one (baby loss) but declined for all the reasons you gave mentioned here. Although talking about things helps to ease the mental burden of suffering alone I just couldn't bring myself to go. Reading your experience has just confirmed that I made the right choice. I have however found Facebook groups to be like a virtual support group so that may be a better environment for you, possibly a younger demographic too. Thanks for sharing #TwinklyTuesday

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  3. Sorry to hear that it was not as supportive as it could be, at least you gave it a try X #twinklytuesday

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  4. I have run a support group before but cannot remember attending one as a participant as such. I guess pain is so awful that many experience mental health issues and that can manifest in negative ways leading to a poorer experience in the group. That is where strong facilitation skills come in. Both myself and my OH have done loads of training courses over the years as trainers and he reckons you can tell who will do what from which chair they choose to sit in! Glad you are coping and not ruling anything in or out for the future #TwinklyTuesday and there are online groups too I guess

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  5. That's really disappointing for you that the group didn't offer better support. Fingers crossed you can find support in other places. #TwinklyTuesday

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