Author Topic: Survey of social support, identity and wellbeing in the CFS and ME population  (Read 700 times)

Offline Wolfgang

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https://lsbupsychology.qualtrics.com/SE/?SID=SV_ba72gRPS6UXLRsh

I came across a survey on social support, social identity and wellbeing in the CFS and ME population with particular reference to CFS/ME forums.  (Presumably it would be ok for the student studying it to register and post on here herself too?)  I found it interesting because I get a lot of general support and social identity from GB and so on but I tend to be avoid CFS/ME forums because I don't seem to have very much in common with the people there except this awful illness and not that much in common even in our approach to that.

For the first couple of years I totally avoided illness forums because they were so demoralising to me. I didn't *want* to adopt or perpetuate any ME/CFS identity.  Eventually of course I had to do all of that, but even now the few fellow patients that I'm friends with I met on here or other dating/social sites.  But maybe this is another symptom of my wrongheadedness in my failure to accept my situation and hence, according to one school of thought, to deal with it effectively and hence its continuing deterioration.

Thoughts?
 
« Last Edit: Jan 20, 2016, 02:48:00 PM by Wolfgang »

Offline sealion

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I have a different long term condition which causes fatigue but for explained reasons (soft tissue problem). I find the 'support' organisations and groups depressing to be around, and most of the members are in very different circumstances to me, straight women whose partner is the breadwinner, or if young are able to live with their parents.

I would be more interested in an LGBT group for living with long term conditions than a condition-specific group.

Offline MzB

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That would be interesting, sealion. I think it might need a central focus - for instance, managing energy levels (which could help it cut across mental and physical health problems).

I can't imagine who would take on the organisation of something like that if it was on a national scale. An alliance of different LGBT Foundations in different cities / areas?

I would be interested in such a thing though.

Offline MzB

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Wolfie, I did find it helpful to connect with other people with chronic heart conditions (and relevant big charities) when I was diagnosed. Just knowing that people had gone through the same diagnosis and related emotional 'whammy' was useful, as was accurate info.

I do have one or two support groups that I look at sometimes on Facebook, which are occasionally useful and where I can give a bit of advice or experience here and there. It's fairly superficial though. And sometimes a downer. And there is a God squad. Those groups don't really provide consistent motivation and encouragement (for instance around mood and physical activity), which I would like to have. But I guess I should be looking for that in face to face situations. A few reliable 'buddies' - in whatever form - could be good though. 

A (butch) friend of mine with MS made a good little film about how her condition has affected her identity, and the emotional/practical challenges of that from a dyke perspective. I will see if I can find it.

*Edit: here's the film - Butch Losses. I may have shared it before.
https://www.youtube.com/watch?v=8A67ZS_Sgwg

Slantrhyme

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 Slightly different, but I make a point of distancing myself as far as possible from any groups labelled blind or visually impaired.
 It's not entirely all my own prejudice, but a fair bit is I suppose.  I've known so many people who have thought of me as a disability before they've thought of me as a person, that I suppose it's made me a bit paranoid.
 And then of course, as has been mentioned, there is the fact that I just don't have anything in common with a lot of these people.  Again, a lot of them are straight, and married to other VI people, or non-VI people who look after them, and a lot of them are young and living with their parents, Who take them to places and pick them up afterwards.  None of this has any relevance to my life.   

Offline Wolfgang

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Thank you for your posts :)

One of the problems for ME/CFS is that nobody knows yet what kind of disease it is or how to treat it effectively and there's not very much funding for medical research either so the result seems to be a vacuum of respectable information and forums filled with different approaches, beliefs and politics, e.g.
- uproven/bad/pseudo science and medicine (I should maybe have put this thread in CMD as this section is for not criticising these beliefs)
- understandable but unhelpful resentment and distrust of mainstream medicine 
- desperation and platitudes in the face of very little credible hope

It seems to be very bad for my state of mind.  I find skeptic blogs more soothing when they talk generally about quack approaches to other diseases, notably cancer and autism - most poorly-understood conditions have the same quackeries applied to them - or when they say about ME/CFS "we know it's a horrible illness and you're not hypochondriacs or psychogenically ill but as regards X or Y treatment we don't think there is any evidence for it", rather than saying "here is a new hope to chase, invest your motivation in it and blame yourself if it fails or worry about not being able to get it and would you be better if you could get it and you won't get better because you can't get it etc. etc."

But maybe I'm the problem.  I still don't know how to rest, for starters, which makes me stupider than everyone else put together.
« Last Edit: Jan 21, 2016, 04:11:46 AM by Wolfgang »

Offline MzB

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Sounds like you maybe need to track down those sceptic blogs and any online groups with like-minded people Wolfie, if you can find them?

It must be really hard when there is so little agreement on cause or treatment. On the other hand, I have a condition with clear treatment parameters, but am a bit bludgeoned by a small cocktail of drugs which in themselves affect my mood and energy quite a lot.

Yes, resting and self care is where it's at. I am a bit crap at that too (apart from irresistible exhaustion).

I saw a blog on 'Sick Woman Theory' yesterday which I liked. It's about the 'modes of protest' afforded to sick people:
http://www.maskmagazine.com/not-again/struggle/sick-woman-theory


Offline Wolfgang

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It's not so much that I want support groups but that I want it to be ok for me to not want them.