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Column: 'We are ill. We are not faking this illness. It is not in our heads'

Before the illness struck me twenty years ago next month, I was a self-employed artist, writes Corina Duyn.

Corina Duyn Living with ME

WE HAVE ALL heard the news that yet again the HSE and the government are letting the ill people, especially women, of Ireland down.

One illness that rarely receives the attention of the press, the HSE and the government, is called ME.

ME

ME (or Myalgic Encephalomyelitis) is classified under the WHO International Classification of Diseases as an acquired neurological disease. Affecting adults and children, it presents itself with dysregulation of the nervous, immune, and endocrine systems.

On top of that we are dealing with an impaired energy metabolism, and post exertional neuro-immune exhaustion. As in, if we go even a tiny bit over our allotted energy for the day, we end up with a huge increase in our symptoms. Even to the point that we are stuck in bed for days, or even weeks/months.

And yet we do not even have a specialist or consultant service available to us here in Ireland. There is no clinical care plan pathway available. Some people affected by ME are completely bedbound, unable to feed themselves and unable to bear any stimulation such as light or noise.

Advocates

I, and my fellow members of ME Advocates Ireland, are determined to change this for good.

We need to be heard. We need to be seen. We are ill. We are not faking this illness. It is not in our heads.

Corina’s story

Before the illness struck me twenty years ago next month, I was a self-employed artist. Within days of becoming ill with a viral infection (initially thought to be meningitis), I lost the ability to sit up, or to co-ordinate my movements.

Over the following months I lost the ability to walk, to read and write, and was plagued by intense pain. My work was shelved. My life was shelved. I lost my independence, needing help with even the most of basic tasks.

My creative mind challenged me to explore this utterly changed existence from the start. This ultimately led to personal understanding and acceptance. Art, writing, and most recently puppetry also gives me a voice to highlight the obstacles and injustice of life with ME including dealing with the Irish health system. (Puppets aren’t pre-judged or labelled so their voices are heard more easily than that of someone with a socially denigrated disease.)

No specialist care for people with ME

There is no specialist care. No acknowledgment. No information on the HSE website. No clinical pathway. No healthcare training for staff.

Although I use a wheelchair, have my house adapted, have the Primary Medical Cert, and am in receipt of Disability Allowance, the HSE’s Disability Support Service does not see me as a person with a disability. For the sole reason, they say, ME is not on their list of disabilities. It defies logic.

Due to this mind-blowing discrepancy, I am denied PA support. They have yet to actually meet me. I am refused support because ME isn’t on their list.

This is only one of the many challenges of life with ME in the Ireland of 2018. We all fight our own individual fight.

Corina Duyn is an artist, writer, and puppet maker, and member of ME Advocates Ireland, a group of seven women who organised an ME Visibility Protest outside Leinster House on May 10.

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About the author:

Corina Duyn  / Living with ME

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