Poll Do you want to get better? The question unbelievers never seem to ask people with ME/CFS.

[ShyestofFlies]

After yet another accusatory paper or article sometimes I wonder about this question. I know what our answer will be as a whole community, but I'd like to see it put to a vote.

It is much easier to accuse a group of people with an illness of not wanting to get better if you never ask them and hear their answer. It is much easier to manipulate false straw-man responses, accuse of masochism and desire to be ill without legitimacy if you don't have data in front of everyone showing otherwise.

This question is meant to be simple. I provide no cures, but let's just say ultimately you have the choice.

In my hypothetical- a cure is found, it is accessible and affordable.

Do you want to get better?

 

[Empty]

Does your sub-conscious want to get better though?

 

[Cort]

Does your sub-conscious want to get better though?

The problem is that the mind generally abhors change. It will stay steeped in sewage rather than change. That's one reason its can be so difficult to start things.

When you try a lot of things that don't work out your mind will always tell you that the next one won't work out either.

If you try things that hurt you it will tell you the next thing will hurt you and not to do it.

Those are all potential roadblocks. They are all also normal behavior that we and anyone else has to get through to get things done.

I think if most people even see a semblance of true health they'd grab for it as fast and hard as they could.

It's why we spend so much money and time and effort learning about this disease. Inherently we want to get better.

 

[Strike me lucky]

NO WAY MAN.

 

[Who Me?]

Yah I want to spend the rest of my life sleep deprived and housebound. It's so much fun.

 

[Not dead yet!]

If politicians and drug reps want to make us out to be unwilling to heal, then they'd better stop encouraging doctors to deride us. In the "olden days" when some woman would act "naughty" and fake being sick because she (naturally) didn't want to do the horrible things women had to do back then... the response, to make her quit it, was derision and abuse. We get plenty of that and look, we haven't stopped. So maybe it's time to admit it's real?

Seems like abusing the victims is a tactical error if they want to cover this up.

Even if some people have overcome it, that doesn't "prove" anything except that the powers that be didn't help them. After all, people "got over" the flu long before any DayQuil existed, or even, Tamiflu, or the flu vaccine. If they don't want to make money on it, fine. But someone will someday. In this case it will be the most honest person, the one who admits it is real. The naysayers have already chosen their POV.

I certainly hope I can overcome it with every tactic I can find to boost my mitochondrial function and any other weapons I think might help, but even if I do, I know that the lasting effects of a long illness is usually lowered general energy. Plus by the time I've overcome it, it will be years later and I'm already middle aged. So then what? Will they tell me I'm "old" and that's why I'm tired?

I'd prefer not to be delivered from "mystery illness that lasts years" directly to "elderly" status. The loss to the workforce should be obvious.

 

[ShyestofFlies]

Sorry for disappearing after posting this, but anyway I feel like this is an obvious "duh, of course I do?" and yet the "unbelievers" seem to think we obviously enjoy this? (Probably because their position is more about false beliefs that we are faking/malingering than fact.)

I will always believe the answer to this comes back to anyone who says maybe/no is facetious. Even if you don't want to work, even if you don't want to socialize, even if you just want to sit on your ass by choice... you still don't want to feel pain, exhausted, have unpredictable symptoms, eye blurryness, flu like symptoms, joint subluxations, breath hunger, etc!

[I'm all for aschewing capitalism, but I've never met someone who enjoyed the actual 'sick' part of sickness, just the side effects (compassion, a day off from work, a free meal, getting out of a bad date, etc)]