ME : we know better

ME they say, "Don't worry, you'll get better in time....."
 
But I know better

No better, after decades of indescribable suffering.

ME, they say," It's fatigue."

But I know better

Bed bound and house bound for years on end, neurological symptoms ignored.

ME, they say," Change your thoughts and you'll feel better."

But I know better,

I did that decades ago and am still profoundly disabled and ill.

ME, they say," We will get your pain and sleep under control

But I know better

My pain and sleep have never been controlled for over two decades.

ME, they say," Just stay in your energy envelope."

But I know better

I simply cannot find it.

ME, they say, " No paralysis here,"

But I know better

Paralysed daily for years on end.

ME, they say," We know how to help you,"

But I know better

They didn't help instead they harmed.

ME, they say, "Don't worry, it won't kill you,"

But I know better

So many friends and other people have died tormented or devastatingly killed themselves, the suffering too great to bear.

ME, I say

When will they accept that we know better

Because we live with it, dangerously having to rely on people who frankly don't know enough about it.Linda Crowhurst