Friday, April 21, 2017

ME is often called an invisible illness.

Guest Post by Moira Dillon. 

'Millions Missing' Guests Posts, to give voices to the people living with M.E

and the reasons behind the Millions Missing Protest in Dublin on the 11th May 2017

Moira Dillon

ME is often called an invisible illness.  Much of what I go through daily is not seen by my closest family and friends. My daughter sometimes comments that I’m looking very pale or that I look even more tired than usual, but to the lesser discerning eye I look well.

I have ME for 10 years this month. It’s a sad anniversary. I was living life to the full until I had to give up work as a Teacher in 2009 when ME developed after a seemingly innocuous virus, twinned with unrelenting stress. 

I had pushed through illness for two years, attempting to stay in work. I didn’t want to know that I had ME. I spent the next few years trying to find a medic to treat me but it wasn't easy. 

ME remains misunderstood and invisible in the eyes of many of the medical profession as it’s not included in training in Irish Medical Colleges, despite the 1969 WHO classification as a neurological disorder.

ME is a disease that affects my body’s systems -hormonal, nervous, endocrine, to name just some. When I have an awful headache, collapse from fatigue, ache all over, I’m the only one who knows this. I spend most of my time inside my home. I don’t have the energy to socialize very often. When a friend calls, the visit is kept short so that I don’t do too much and crash with fatigue and pain.

This management of my illness is vital to keep my symptoms in check and to prevent post-exertional malaise (PEM), a spike in symptoms. I practise the 'energy envelope theory' by self-monitoring and self-regulating my energy expenditures. 

By learning to pace my activity levels, I can stay within my “energy envelope”. I balance expended energy with available energy to reduce the frequency and severity of my symptoms. I consider myself fortunate because the crippling symptoms of the early days have eased enough to allow me to enjoy life.

When someone is diagnosed with ME I like to tell them they’re not alone, there’s lots of support out there. And most importantly tell them that ME is a physical illness, and that there are things you can do to help manage your symptoms, and to avoid stress which plays a huge role in this illness.

One of the hardest things to accept about having ME has been people’s misunderstanding and ignorance, that some people see this neurological illness as all in the head. It has been described to be as debilitating as late stage HIV Aids and MS and yet there is still ignorance attached to it. We do not have the energy to get through our daily lives never mind deal with the ignorance.

I’ve had enough of the neglect of people with ME. I got involved with the Millions Missing movement to raise awareness for ME, an underfunded and ignored disease; to protest the lack of government recognition and medical/public education on ME; and to demand health equality for the millions missing due to the disease ME.

Links and Further Reading

  • See more about the Millions Missing Protest HERE

No comments: