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The 25% Disease: Is Chronic Fatigue Syndrome (ME/CFS) Unique in How Many People are Homebound?

Messages
10
Location
U.K.
I would dearly like to never darken another surgery again but these people are also the gatekeepers for our meagre benefits and as mine are due for renewal more stress beckons....

/hugs

Well after 25 years I finally found a doctor that didn't want to just throw me on a scrap heap but now it seems as we've been through Anything That Might Help that it's just an uncomfortable..well.. I don't know what to do with you.. Which I guess is why so much input from the cfs/ME clinic ...but she's listening to whatever is suggested by the clinic so... Happy days, I hope...
 

u&iraok

Senior Member
Messages
427
Location
U.S.
With nothing, you can't miss what you never had if you get sick as a child, you don't know what it means to be an adult, in society. So I don't.

I can dream of it, but can't lament over no longer being a teacher, or a parent, or a violinist who was popular and in demand and etc etc. As I was never anything, I remain, nothing. Maybe this isn't common but of the people I've talk to (who also got sick, e.g. age 12-18), they all seem to have this same psychological profile of acceptance of not yet having an adult life, and this makes them (now they are middle aged) crave it more and by wanting it more, they (and I) don't suffer from depression

Wow, Research1st, whatever your real name is, this is heartbreaking. I always am thankful that I got sick in my late 30's and every time I hear about someone getting sick in their 20's or earlier my heart goes out to them because I at least got to have that, troubled as it was.

You are very eloquent, so call yourself Writer. You are a Writer. You can be a Teacher in that capacity. You can be Friend. Fellow Human Being. Fellow Phoenix Rising Member.

When I was less sick, I wasn't treated as badly. The more disabled I got, the more I irritated doctors that I didn't get better. Only recently have they too realized CBT/GET was based on a fabricated idea, they got even more hostile as there was literally nothing they could offer me. These more approachable 'modern day' doctors didn't set me up, they just vanished, because they know the situation is futile, depressing and hopeless. So the 'good guys' ignore you, and that's the best it gets - no health care monitoring, diagnosis, treatment = more disability.

There is a kind of undercurrent in the U.S., besides the beliefs that sickness equals weakness, you're a hypochondriac at heart and the fear that they will get sick so get away from me don't remind me that's sickness and death are wolves at the door and let me live my life without feeling guilty or thinking about the less fortunate, and the powerlessness they feel in not being able to help you and in exposing their lack of knowledge and the system's weakness---that strong and intelligent people research their illnesses and if they are successful they will have the money and the brains and the know how to fix themselves. If you're poor it's your fault, if you're not smart it's your fault and if you don't have money, too bad, that's your fault and all these things make you second class citizens. It's really your fault you're in the predicament you are and if it's not your fault, well that's too scary to think of.The rich and beautiful and powerful and smart make sure that they are eating organic and buying chemical-free and living in clean places and going overseas if necessary to find cures. The doctors themselves do this behind the scenes for themselves and their families.

It's a kind of elitism that reaches into the realm of Health.
 
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