A Troubling Truth - "Dr Claudia Gillberg reflects on her own experience of living with... (M.E.)

[Kyla]

http://www.centreforwelfarereform.org/library/by-date/a-troubling-truth.html#

A Troubling Truth
Author: Dr Claudia Gillberg

In this important and moving paper Dr Claudia Gillberg reflects on her own experience of living with the chronic illness, myalgic encephalomyelitis or ME. She describes the multiple and reinforcing challenges she and others face as they try to find their place as full citizens in a society that has become confused about human value.

Imagine that you become disabled by long-term or chronic illness; then imagine that your disability is hard to see or, even worse, disputed by powerful professionals with a vested interest in rejecting your reality. Imagine that you lose your status and role within a highly valued community; then imagine that it is near impossible to reconnect to family, friends, colleagues or even those who share your disability. People with ME often face these layers of interlocking injustices, and they find that the welfare state, rather than an ally is part of the problem.

You can find hope in this essay. Social media, new forms of activism and learning and new forms of community life are all possible. But the troubling truth is that where injustice becomes invisible then the road to restoration is long and it challenges all of us.

 

[daisybell]

Powerful stuff - I'm just reading through and was very struck by this paragraph, which is my experience exactly....

"I feel weighed down by the memory of my attempts to spread education and reason regarding my new situation. Friends and relatives, with whom I have spent hours, days and months in discussion have gone from my
life. It seems the more I tried to explain, the more alienating I became to them but I do not know what caused the rupture except that the social discourse or narrative about my illness, that dictates I am supposed to be pitied but not believed, cannot have been conducive to learning. Long since debunked psychosomatic or psychogenic explanations for physical illnesses are alive and well, in fact they appear to celebrate a revival that mirrors the emergence of possible biomarkers for my illness, which is an interesting paradox."

 

[CFS_for_19_years]

This is great writing by Dr. Gillberg, everything articulated so well. I wish everyone I knew would read it.

The failure to acknowledge ME’s debilitating symptoms or even its
existence, results in neglect and an absence of adequate treatment
options for sufferers. The only therapies offered by the NHS are cognitive
behavioural therapy (CBT) and graded exercise therapy (GET) neither of
which has proved effective, with the latter treatment often causing a marked
worsening of symptoms, unsurprising as exercise intolerance is a cardinal
indicator of ME. If you broke your arm and the treatment offered was to
have your leg put in plaster, you would probably be unhappy and complain,
it is highly unlikely you would express gratitude towards the medical
professional placing your leg in plaster. This is effectively what occurs
with ME sufferers, patients are denied suitable treatment and often abused
when the treatment is ineffective ‘you obviously do not want to get well’ or
considered as ungrateful for querying the usefulness of such therapies. These
treatments are predicated on ME being psychological in origin; treatable
symptoms therefore often go unnoticed and are left to worsen.

 

[shannah]

So many parts of this writing articulate so many aspects of the ME experience so well.

"The relentless physical pain and crushing isolation that chronic illness
and its management bring about were, and are, cruel. The experience of
being ill was exacerbated when I realised that few seemed concerned with

my altered situation in life. The terror I felt at this moment of realisation

was indescribable, that something so severely affecting my life and sense of

being meant so little to others.

... Losing my grounding due to illness and disability feels
like the earth is shifting beneath my feet continually. Feeling ill continually,
chronically (many fail to comprehend the meaning of the term) is horrible;
feeling ill and being excluded from society and everything that previously
gave your life meaning and worth, is much, much worse. This is the situation
I found myself in, and the failure of others to acknowledge, or even observe,

my new reality caused me significant anguish."