A Guide to Living with Ehlers-Danlos Syndrome (Hypermobility Type) by Isobel Knight

Author:Isobel Knight
Language: eng
Format: epub
ISBN: 9780857011800
Publisher: Jessica Kingsley Publishers
Published: 2014-12-07T00:00:00+00:00

SUPPORT GROUPS AND FACEBOOK

In recent years the introduction of online support groups and Facebook which are all forms of social media have become an increasingly important way for people with chronic complex conditions to communicate with each other from the comfort of their own homes. When I raised this topic on my Facebook page, I received the following responses:

I love the friends I have made through the online HMS [EDS-HT] groups, and it does help to have people who truly understand. I think it makes the condition a lot less isolating, especially if your mobility is limited.

It is so much easier to get support and information via online groups/forums, but I find I spend so much time on them that I end up following only one or two and the others get neglected. It is great to know they are there though and if I need something I know I have plenty of places to go to find it.

I agree as well that if you have limited mobility or even feel you have to forego more social events due to fatigue or any of the other associated problems, these groups provide a lot of solace and I love knowing that there are people to talk to here and it does make me feel less isolated.

The Hypermobility Syndromes Association (HMSA) have an online forum as well as Facebook, which is very well moderated, and there are positive threads. Of course no forum discussions can possibly substitute official medical advice.

In 2012 I was asked if I would volunteer to run the London Support Group for the HMSA. I agreed to do this having had previous experience of running support groups and facilitation skills from my teaching background. The group has been running for two years now and I know that it is something that members find highly beneficial and they appear to be so grateful that something is organised in a public space (usually a pub) where they can meet with other patients who have the same condition. So far the meetings have been very informal and HMSA members have had the chance to talk to other members about their condition and shared stories. Rather than being negative, people had positive ideas for management of the different problems encountered, and there was a general sense of not going through their symptoms alone – that others understood this too was very powerful. The group situation is invaluable for the newly diagnosed, some of whom are a little overwhelmed by their diagnosis and require support in their future journey in living with EDS-HT. As a group facilitator I find running the group a very rewarding thing to do, although I have discovered that I cannot possibly be ill because the members now see me as a beacon of hope, which is a double-edged sword. However I ensure that I have both support and supervision so that I am not too overloaded. Members say:

I went to my first one a few weeks ago and it

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