Sophia Wilson (Mirza) stierf in 2005 op 25-jarige leeftijd (klik hier,
en was de eerste patiënt in het Verenigd Koninkrijk met als officiële doodsoorzaak ME/CVS.
In een bijdrage aan de Irish Times vertelt haar zus Róisín hoe zij in het begin dacht
over de ziekte van haar zus (en zich zelfs geneerde om er met anderen over te praten) en
hoe zij langzamerhand tot het besef kwam dat haar beeld van ME/CVS totaal niet klopte...
My health experience: Róisín Wilson
Sophia’s nervous system had been ravaged by ME
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.
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!"
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.
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.
Sophia suffered and died from ME, but nobody else should have to