New MEA Guide: ME/CFS The Ten Key Aspects of Management | 05 February 2020

@Invisible Woman
Absolutely agree. Young kids are not driven perfectionists and most people’s lives look busy and overworked before they get ill. It’s just another way to blame the patient for their illness. It’s not our fault we continue to push on too long after getting ill either, it’s due to being given inaccurate advice, financial issues, family responsibilities etc etc. Not attitude, survival and lack of understanding about what we are dealing with until it all comes crashing down.
 
Jonathan Edwards said:
I cannot see the basis for saying that people should be managed by GPs.
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My approach since getting ME is not to go near any GP I'm not sure I can manage. By which I mean if I want tests done, they do them or refer me to an appropriate specialist. What else do they think I'm there for? If they start waffling psychobabble I'm outa there. I've had one GP appointment in the last 2 years at a practice where they do what I bloody well tell them. I suspect they think I'm a bit of a nutter, because they seem rather apprehensive when I turn up every couple of years, give me exactly what I ask for, then hide behind the receptionist when I phone for the results. God knows what they write in my file, but as long as I get what I want ...

InfiniteRubix said:
I totally understand that this will not apply to everyone, but it is not irresponsible to encourage people to find whatever silver linings are available, if available. It is responsible IMHO.

The problem is the loaded word "gain". It would not be so loaded if relevant professionals and society were all properly informed. The word "gain" is very wrong because of our context.
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I'm afraid I disagree. I didn't take the word "gain" to mean "secondary gain", and understood it to mean "silver lining". I still find it totally inappropriate. I regard the way modern society regards it as axiomatic to take a positive view of things if possible to be as open to abuse and and manipulation as any freudian psychobabble. It's a fad from the 1860s that should have been discarded to the dustbin of history long ago, but it is just too much of a money-spinner to be allowed to die so it has grown into a pervasive giant instead.

If I ever recover I will not be musing whimsically about what ME taught me, how it made me the person I am, etc etc. Without ME I would have learnt more and developed more as a person. The fact that because of ME I am now a much better chess player than I otherwise would be is not a silver lining, I'd quite happily have waited until my retirement to brush up my game, and spent my middle-aged years more productively. I see plenty of my family, but not travelling and walking with my wife as we planned, but from the sofa while she runs the household on her own, works more to cover my loss of earnings, and deals with most issues that arise with our kids.

I am fortunate to be able to live an enjoyable and to some extent productive life with ME, am grateful for many things, and am actually capable of a sunny and positive disposition a lot of the time. But that has nothing to do with ME, and I'm buggered if ME is getting any of the credit for anything. ME is completely shit, and the position sufferers and their families find themselves in is a fucking disgrace. The appropriate response is to feel disgusted and furious, and I won't be distracted by being encouraged to find whatever silver linings are available. Making the best of a shit situation, which is what I'm sure we all do, is not a silver lining.
 
TiredSam said:
But that has nothing to do with ME, and I'm buggered if ME is getting any of the credit for anything. ME is completely shit, and the position sufferers and their families find themselves in is a fucking disgrace. The appropriate response is to feel disgusted and furious, and I won't be distracted by being encouraged to find whatever silver linings are available. Making the best of a shit situation, which is what I'm sure we all do, is not a silver lining.
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Hear, hear! This is SO well said.
 
NelliePledge said:
Isn’t secondary gain just an intellectual sounding term that means more or less what silver lining means to the general public.
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I think secondary gain implies getting something from being ill that we would otherwise not have got that is better than we could have got if we'd stayed well. It implies we are using 'illness' as a way of getting what we want, so it gives 'scroungers' a way of getting money out of the state to live on instead of having to go to work. The implication is that sick people shouldn't be given state benefits as it encourages us to stay sick (as if we had a choice).

Silver lining, to me, is more about telling sick people to think positive and list what we have gained from being ill, mainly designed to help healthy people cope with being around sick people, and to make therapist feel like they are making us feel 'better'.

It reminds me of the carer who said, as she was helping me shower the other day 'I bet you love having someone to wash your hair for you'. My tart response was that I'd much rather be well enough to do it myself. She apologised, but did something similar the next time she came. It seems to be a mindset of some in the caring professions that pointing out our (imagined) silver linings will make us feel good. It might make them feel better, but it just reminds us of what we've lost.

Either way, I see no secondary gain or silver lining from being ill for 30 years. All I can do is make the best of what life I have. And give myself permission to be grumpy about it, and angry with those who have gaslighted us.
 
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