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.

 

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 ...

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.

 

Hear, hear! This is SO well said.