I never imagined my sister would die from ME

The Irish Times - Tuesday, January 24, 2012: MY HEALTH EXPERIENCE: RÓISÍN WILSON Sophia’s nervous system had been ravaged by ME

BEFORE MY sister Sophia got Myalgic Encephalomyelitis (ME), I had subconsciously developed a disparaging view of the disease. The little I knew about ME at the turn of the century was from how it had been portrayed in the tabloid press.

ME had been painted as some kind of luxury illness, labelled “yuppie flu”. It seemed a very boring disease and I can’t say I had any interest in it.

I had got the impression ME was kind of a sabbatical illness, an excuse for a few weeks off work to recharge the batteries. So when my mum told me Sophia had ME, I wasn’t that worried.

Sophia, two years my junior, had had meningitis before and malaria twice. What was ME compared to those bad boys? My feisty sister could easily whip this lily-livered ME.

I was living in New York at the time and on transatlantic phone calls with our Irish mum, she would tell me how my sister had had to leave her London life because she was too ill to look after herself. She told me Sophia was getting worse and that nearly everything hurt my sister.

I thought my mum was exaggerating; how can everything hurt Sophia?

Light hurt my sister, noise, smells, vibrations, the list went on. My then 26-year-old sister had almost zero energy and had to lie in a blackened room day and night, wearing a blindfold and earplugs, in constant pain.

If that wasn’t bad enough, the doctors treating her said this disease was a mere “wrong belief”, despite doing no physical tests on their patient. And just for good measure they called my mum an enabler, for believing her youngest child was genuinely ill and threatened to remove her as Sophia’s carer.

I listened to what my mum told me, but I couldn’t really take it in. How could Sophia be so desperately ill for months on end? The ME my mum described was like nothing I had read about on the net. ME is often referred to as Chronic Fatigue Syndrome (CFS) and the information my Google searches revealed at the time did not correspond with what my mum was describing about Sophia. I believed my mum, but I could not grasp just how ill my sister was.

By the time I came back to Britain, I was still none the wiser, but I was more clued up about telling people about my sister’s disease, or rather not telling people about it.

Upon hearing of my sibling’s ME, people’s reactions ranged from “Is that all? I thought you were going to say something serious from your tone of voice”, to polite “humour-her” nodding and baffled, sympathetic faces, and then the slam dunk of some responses.

“Maybe your sister has got issues with your mum/dad/whoever,” or words to that effect. “Issues!” I snapped at the last person who suggested that, “Issues! If you got ME from having f***ing issues, then the whole b*****d country would be down with it!”

Not long after I returned to Britain, 9/11 happened. My then husband was in the Twin Towers that day, and with hindsight, I can see I over-reacted to 9/11, because it was on the strength of that, that I decided to become a nurse.

Throughout my three years of nurse training, I didn’t tell a soul about Sophia and the ME. I don’t think I even mentioned I had a sister. I saw how ME was viewed from the other side of the fence and it wasn’t good or accurate. One day during my second year of training, I was on my cardiac placement and telephoned my mum on my break.

She was distraught, because at that very time I was calling her, the police were breaking down the door so Sophia could be sectioned into a mental hospital.

I didn’t know what to do, so I called my brother Shane, who went straight down to help mum and Sophia. I then went back to the ward and couldn’t say anything to anyone.

And it was around that time I nearly cracked. I very nearly told my personal tutor about my fears and concerns for my sister. I was about to blurt it out once when my tutor mentioned that our confidentiality could be broken if somebody was at risk or over something illegal.

Confiding about Sophia could have me seen as an enabler, it could have jeopardised Sophia even more; I couldn’t risk it. I stayed schtum and blamed my tears on PMT and the stress of course work.

Visits to Sophia were rare and precious, they had to be in the dark with only a smidgen of light. Her body may have been torturing her, but Sophia’s mind was still all there. Those 13 days in the mental hospital had done irreparable damage to my sister, though, she went downhill from there.

I never imagined Sophia would die from ME, I thought she would outlive the lot of us, by years. But my sister became the first person in England to officially die from ME, a dubious honour indeed.

Sophia was 32 and had been bedridden for the last six years of her life. I was in shock and grief-stricken for months after her death, but in among all the pain, there was a tiny part of me that felt lighter; that tiny light was one of relief, relief my sister was not suffering so unbearably anymore.

The post-mortem revealed the physical evidence of Sophia’s ravaged nervous system, proof at last her disease was of physical origin. Sophia’s death from ME made news around the world, but it hasn’t changed how people with ME get treated in Britain – well not yet it hasn’t.

When Sophia got sectioned, the event was tape-recorded. This profoundly moving audio is included in the award-winning documentary Voices from the Shadows , a film made out of sheer desperation by the family of a girl who suffers with severe ME.

This documentary includes the stories of other ME sufferers and carers, as well as expert medical opinion and facts. This film needs to be shown to as wide an audience as possible.

Voices from the Shadows will literally save lives and spare much unnecessary suffering and bring much-needed understanding about the reality of ME. This documentary urgently needs a way to be seen by the masses. Please go to Voicesfromtheshadowsfilm.co.ukfor more information.

Sophia suffered and died from ME, but nobody else should have to.