At the age of 15, Jessica became acutely unwell with an
illness called Myalgic Encephalomyletis (M.E). She was continuously
hospitalised from 2006-2010, suffering with the most severe form of the
condition. Now still mostly bedridden even twelve years after it began, she
blogs at www.jaytay.co.uk and has
featured in a film called Unrest.
My name is Jessica Taylor-Bearman, I am 28 years old and have been
suffering with severe M.E. (Myalgic Encephalomyelitis) for half my life. I went
from being a very active teenager, who was always out and about, to being stuck
in a world of one room, in complete agony. The common misconception about M.E.
is that one *just* feels ‘a bit tired’. I could give a whole new meaning to the
word ‘tired’. It feels as if a double decker bus full of exhaustion has hit me
head on. Every single moment of every single day. I have crippling neurological
pain that is incredibly debilitating, and that is just the beginning of my
disease.
I
first became ill with M.E. after I caught a flu virus at the age of 14. I
didn’t want to be ill so I carried on regardless, but this was my downfall. I
became more and more unwell. Doctors had no idea what to do with me, and it took
six months for me to be completely bed bound. To all my peers at school, I had
just disappeared. I always describe it as I fell off the whirling twirling
world, and was just orbiting in space, too unwell to get back on the ride, I
watched instead. Being chronically unwell is soul destroying. For a while, my
friends came to visit me in hospital, but the problem was, I couldn’t
communicate with them because the neurological symptoms were such, that I could
not speak or understand what they were saying. They would just stand over me,
crying as they looked at their once active friend, who was now reduced to a
girl behind dark glasses, kept alive via nutritional tubes going from my nose
to my stomach. I was a shadow of my former self.
Interestingly,
the first thing that doctors tried to say was that I must be mentally unwell
too. They could not explain my symptoms, therefore I must be clinically
depressed. A psychiatrist who had just half a day training on M.E. thought she
knew what I needed, and that was to be in a locked ward in the Maudsley. I was
very lucky because my parents were incredible advocates for me. They challenged
the doctors and did all they could to prevent me from being taken to a mental
institution. It is shocking that when someone is so desperately ill, they have
to fight to be taken seriously. At the time, I wasn’t depressed. I have no idea
how I managed to stay so positive when the rest of my world was falling apart.
I started a diary called ‘Bug’, which my parents would write down. Throughout
the day, I would slowly code words to them to try and get across how I was
feeling. It was only once the doctors had spoken to my school nurse, who had
said that I was a popular girl who was very happy, did they start to treat my
physical disease more seriously.
I
spent over four years in hospital, and many years in and out of hospital too.
Now, thirteen years after my first admission, I am rediscovering myself. For a
long time, my disease was my identity. People only knew me as ‘the girl with
M.E’. Dealing with having a chronic illness has made me completely revaluate my
life. Over the past few years, it has influenced my mental wellbeing. I just
want to feel well again. I can’t even remember what it feels like to be fully
well.
I
have found out that writing my account of what I have been through very
therapeutic. I wrote my book, A Girl Behind Dark Glasses, to give a voice to
severe M.E. sufferers, as often we are just missing people. We are missing from
society and missing from our former lives. I have missed weddings, funerals,
and other special occasions.
May is M.E. awareness month, and I am writing this
blog to bring a voice to all the thousands of sufferers of M.E. It is an
invisible illness that hits around 250 000 people in the U.K. It is not a rare
condition, but the amount of funding given by the government for biomedical
research is woefully low. To give a face to this cruel disease, a campaign has
been started called #TheRealME. You can join in and #GoBlue4ME by
visiting the M.E. Association to see
how you can get involved. If there are so many people suffering with this
condition, why are we still the millions missing?
