a friend dismissed my requests that they read a few articles on the ME association website (Guardian Burnley report & Changes to ESA WCA Descriptors among them)[I’ll do links when I next get on net other than by phone]. They meant well but seem totally oblivious to the fact they have repeated the pattern of not being listened to & not being believed.
In reality I feel as if I have NO ONE to talk to, NO ONE to keep up to speed on my behalf. Feel totally isolated & alone.
The pains in my chest & up my neck have returned (had if for the entire EIGHT MONTHS that my last WCA Assessment took.) Upped the aspirin to be safe.
And the anxiety dreams have also returned. At worst they are about ATOS Med Assessment & are upsetting in the extreme.
At best they just involve being made homeless. It’s always about being disbelieveved & being pushed to total breakdown.
I often read of people with MS hailing that they” happen to have MS but don’t let it define them.”
I envy that they are allowed to get on with their lives & process their lost lives. The stark difference is that they have black & white test results they can wave in the faces of the disbelievers.
People with ME PWME MECFS in UK reliant on the benefits system do NOT have the luxury of ‘proof’. The constant vilification of us, the whispering campaigns seem purpose made to further isolate us & punish us for the failure of the medical profession to invest in biological research.
I’ve had enough.
The fact that under the previous assessment criteria someone along the line ‘believed’ us enough to award us IB is NO GUARANTEE whatever that we will qualify again. That’s what we want you to know. That’s why we ask you to read the FACTS about what is happening every day to people who like us, previously qualified under the old system.
We are exhausted from existing in limbo. We just want & need to know that you know. We need know that you are protecting us & that includes being heard.
Trust me, if you are a friend of someone with MECFS ~ each time you fail to listen, each time you forget to do something you said you would, each time you are ‘dismissive’ even accidentally, you are causing deep offence & hurt to someone you may profess to want to love & protect.