The world of the sick seems to harbour a particular brand of ego. I think many doctors initially become doctors to help people and in doing so get a daily ego boost – validation that they are a ‘good’ and kind person. I think many support groups are run by people who initially want to help others and again in doing so receive validation. But in nearly 20 years of being involved in the world of the sick I’ve seen this initial helpfulness go horribly wrong time and time again. Doctors egos that have become so inflated that they appear to actively dislike their patients and lack all interest in the conditions from which their patients suffer. And support groups who become all about the leaders and not about the sufferers they were created to help (which happened in spectacular fashion in a leading UK ME charity some years ago). I’m not altogether sure why this happens, but happen it does.
I’ve sadly lost count of the number of online support groups I’ve joined over the years that I’m now no longer with. They started off full of good intentions but ended up being run by people who saw them as “their” group, and not the sufferer’s group. I understand the huge amount of work which goes into creating a support group (I’ve been instrumental in starting 3 over the years, one ‘real life’ one and 2 internet based ones) and it’s a thankless task. No-one knows what goes on behind the scenes and I’ve put so much into the groups I helped create at times my health suffered terribly as a result. But I never saw them as “my” groups – they were always the sufferer’s groups designed to meet the needs of the people who joined and took part in them.
The new UK EDS/MCAD Group I recently started through this blog has apparently upset the Leader of a mast cell group I’m currently on (hereto referred to as Group X). I’ve been told I should have informed the Leader that I was starting the group and somehow gotten permission to go ahead. I’m absolutely baffled by this. For a start my blog has nothing whatsoever to do with anyone else but me – anyone can blog and millions do. Secondly every single post I make to Group X contains a link to my blog as a signature, so it’s not like I’m keeping my blog a secret. And thirdly my blog is predominantly about Ehlers-Danlos Syndrome and how this has pre-disposed me to having MCAD, whereas Group X was created to help people with Mastocytosis and doesn’t focus in any way on EDS (although a few of the people on the group have EDS and a variety of other conditions). Group X’s mission statement from their website says “Group X is a private mailing list for sufferers of Mastocytosis and their carers……It is a source of technical information, and an informal chat area – and everything in between”. No mention of EDS. It has now become untenable for me to remain on Group X, which is devastating to me as they know more about mast cell disease than I could ever hope to learn. They don’t know about EDS though and I do, because I’ve lived with it for 46 years. It’s truly beyond my comprehension why my wanting to chat with other sufferers via my blog who share EDS and mast cell disease is so threatening.
The world of the sick is not a competition. Those of us with complex illnesses need more than one source of support. I belong to an American EDS group, a British ME Group and (until today) a British mast cell group. None of these groups meet all my needs as each is specific to their field. This blog’s EDS/MCAD group helps pull 2 of those threads together, but leaves people with ME out in the cold. Luckily there are already several UK groups for people with ME, which discuss a variety of topics including EDS and Mast Cell Disease, but specifically exist to support people with ME – that is their primary goal and focus. Just like Mastocytosis is Group X’s primary goal and focus. If I ever get so involved in my blog’s support group that I won’t allow anyone to receive support from elsewhere feel free to shoot me because I will have seriously lost the plot.