I never imagined my sister would die
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
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
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
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
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
Sophia suffered and died from ME, but nobody else should have to.