What is the one thing about suffering with severe ME/CFS that the world needs to know? Severe ME Day

[ahmo]

@jimells Thank you for your eloquence.

 

[Sean]

My name is Jim. I'm 58 years old. This disease has wrecked my health, but it is society that has wrecked my life.

There it is.

At a personal, emotional, philosophical level, I can handle anything nature throws at me. Nature can be hard, but it is not malicious.

But I have great trouble handling the foul and often malicious shit society throws at me in relation to this disease. That is where the real isolation and suffering come from. That is what breaks your spirit.

 

[alex3619]

Using Peterson's estimate: Nineteen million patients world wide. Every year they experience a years worth of torment and suffering. So that is nineteen million person years of suffering, every year, for people with a disease that is being ignored. Even in the US alone that is a million years of suffering per year, presuming the one million estimate. If its really four million ....

 

[WillowJ]

Using Peterson's estimate: Nineteen million patients world wide. Every year they experience a years worth of torment and suffering. So that is nineteen million person years of suffering, every year, for people with a disease that is being ignored. Even in the US alone that is a million years of suffering per year, presuming the one million estimate. If its really four million ....

In one sense, it matters which estimate, but in another way, it doesn't matter. All people with ICF are treated the same as us: "you don't belong in the doctor's office, go see a shrink or handle it yourself". Regardless of whether they have ME, MS, cancer, hypoparathyroidism, or whatever: they are not getting any help. No "fatigue" patient is.

(Edit: this is a generalization, representing a common scenario. Of course some patients get diagnosed eventually, but there is a staggeringly huge number of undiagnosed and misdiagnosed patients who present with fatigue and/or describe weakness which gets brushed off as 'just another case of common fatigue')

Until someone gets their feet off the desk and goes to work telling doctors why and how to diagnose patients more carefully, and finding the funding to do research for ME properly, this situation will continue.

People will suffer. Every minute of every day. Some will die.

And as has been said, great talent will be lost to the world (not that all of us are talented, but out of so many, surely some are talented scientists, mathematicians, engineers, economists, etc.). We are shut up in our houses or rooms, without proper care, unable to finish school, go to work, or even have normal social lives (just a little, mostly through our computers, except the most ill of us).

 

[alex3619]

The not-quite-so-ill patients do get to have some limited life on the computer, like I do. The really severe do not. They are cut off. This should never be forgotten.

 

[Legendrew]

Thanks for all the great responses. I've begun compiling the responses and writing the article and will continue to do so over the next week. There's still time to make your response if you haven't gotten around to it!

 

[Dr.Patient]

That suicide, though often contemplated, does not happen among us who are still alive, because we have neither the strength nor the planning to carry it out.

Severe ME patients.

 

[Sushi]

That suicide, though often contemplated, does not happen because we have neither the strength nor the planning to carry it out.

It happens all too often.

Sushi

 

[Dr.Patient]

It happens all too often.

Sushi

Edited

 

[bailey2]

Severe ME can be long term and progressive. My experience is one akin to living in solitary confinement in increasing pain with little hope of reprieve during my lifetime.

 

[soxfan]

That most of us go to bed a perfectly healthy person and get up the next day will an illness that immediately changes our life and those around us forever...

None of us would chose to stay home during family gatherings...outings...social events...it is the fact that we would suffer major consequences if we did and those people would not see us suffering and crashing afterwards.

If you go to your doctor and have been a previously healthy person during the prior 25 years then we are NOT suddenly "depressed"..."need a vacation"...have "empty nest syndrome"...."need to exercise more"....the list goes on.

Many of us in the early years of illness try to push on in order to keep some sort of life style that we previously had. We don't want to disappoint others or tell our co-workers that we have CFS because their first thoughts would be that they are tired too....

 

[Keela Too]

I'm not severe.... but I wrote a bit on my blog about Very Severe ME. I think the world needs to know how this illness has been treated.

http://sallyjustme.blogspot.co.uk/2014/08/living-death.html

 

[Amused]

For me it's the uncertainty. It's a fluctuating illness, so coping strategies that worked last year, last month, last week or even a couple of hours ago, suddenly stop working, and you can't rely on your mind or your body to do what it could do before, never mind what you want it to. And a severe relapse is unpredictable, uncontrollable and absolutely terrifying.

 

[Tired of being sick]

The mountains of ridiculed abuse we take on a daily basis from "main stream" medical "professionals" who are supposed to be there to help us..........

Nothing drains hope faster,nothing, including our sickness..........

 

[Tired of being sick]

^
Edited:
added "Main Stream"