Non-partisan UK-based Disability campaign. Advocacy for people with invisible illness and/or physical & mental health conditions. Also Carers, their Families and Friends.
Our individual voices are too quiet to be heard, but collectively we can shout loud enough to drown out this tide of abuse against us. Disability Hate Crime, lack of full legal protection, people in care homes costing too much to be let out and not one political party willing to fight for us.
I was born with a connective tissue disorder called Ehlers-Danlos
Syndrome. I also have multiple secondary conditions - Fibromyalgia,
Irritable Bowel Syndrome, Postural Orthostatic Tachycardia Syndrome,
Depression, Social Anxiety, and possible but undiagnosed ADHD-PI and
Aspergers. The EDS was a recessive gene in my family and had not been
seen for two generations. The last person to have it was my paternal
great-grandmother, who was undiagnosed until it was too late. As a
result, nobody recognised the symptoms that both me and my sister were
showing practically from birth.
We were clumsy, we had late (physical) developmental milestones, we
were constantly covered in bruises and scrapes and scars and had no
idea how we got each of them as they were so common. We were in pain
but unable to express where or why. When everything hurts, it's
difficult to give specifics and when you don't understand that
subluxations (partial dislocations) exist, all you know is that it
hurts and feels 'wrong'. When children give such vague answers people
assume they're making it up for attention. We were told over and over
that everybody gets aches and pains and it was perfectly normal. When
we didn't want to do things that the other kids did (running and
playing games of tag etc) we were told that we were being lazy and
These things were drilled into me from such a young age that I
believed them. I pushed myself past my limits trying to be 'normal'
and do 'normal' things. When I reached puberty my health dropped
dramatically due to the extra stresses on my body. The pain grew and
my cognitive functions began to slip. I was being abused at home by my
mother and bullied at school. Every authoritative figure I tried to
speak out to agreed with all the previous ones - I was lazy,
antisociable, rebellious and awkward. I had an 'attitude'. I could no
longer concentrate on my work. I was depressed and in chronic pain.
Every moment of every day was a struggle for me. I lost the
scholarship I had at one of the top private schools in the country as
I could not bring myself to concentrate any longer. I have always
loved to learn, I have always had a thirst for knowledge that has
never been quenched, and yet when I could no longer do my schoolwork
and I reached out to ask for help - I was just being lazy. I wasn't
trying hard enough. They knew I could do better if I just tried. Why
was I being so awkward? Why did I have to turn into such a rebellious
I finally got a doctor to listen to me. But as a young female with
obvious mental health problems he diagnosed me with depression and
stress, writing off all my physical symptoms as aspects of these. He
gave me antidepressants and sleeping pills and sent me on my way.
Neither of those did anything for me but he continued to insist that
all my problems stemmed from stress and depression and piled more
pills on me. He also gave me a note to give to my teachers to get me
out of any trouble I might get in from not doing homework etc. The
first (and only) teacher I showed it to screamed in my face that I had
no idea what it was like to be stressed. She was a TEACHER. SHE knew
My health continued to deteriorate. Some days I was in so much pain
and so exhausted that I couldn't get out of bed. I played 'acute' sick
to get out of school. Nobody ever believed me. I hated myself for
doing it - I loved school, but was too 'lazy' to get up and go.
When I was at school, I would hide in the toilets to get out of having
to do PE. I would spent the entire lesson crying quietly to myself in
a cubicle, hating myself and feeling so ashamed for not being able to
do it. When I was caught and forced to do it, they tried to make me
run laps as a punishment for skipping the class. I'd sublux an ankle,
without realising what I was doing, try to run on it, but fall flat on
my face. My teacher dragged me up and pushed me forwards. No matter
how many times I fell, he would keep doing it as he 'knew' that I was
only faking it and he wouldn't tolerate my laziness.
I had no social life. Everyone at school laughed at me for faking
illnesses, for having so many days off sick. They made fun of me when
I tried to join in PE. They snickered behind my back during tests when
I was trying so hard to think straight that I was practically in
tears. They poked me, hard, and due to Fibromyalgia even soft pokes
hurt, then laughed at me when I screamed in pain. I was so
melodramatic, they said. They threw things at me, which left me in
tears and with huge bruises. I tried to show people the bruises, but
they insisted that I was such an attentionseeking liar that I'd
bruised myself to try to get others in trouble.
In short, my childhood and teenage life was hell. My mother abused me
at home. I was bullied at school. I had no friends and nowhere else to
go. I would lock myself in my room by sitting with my back against the
door so that my mother couldn't come in and get me.
At 16 years old, I moved out. As soon as I was legally able. I was too
young to claim any benefits. I was told that if I was still living at
home at 16 I could claim JSA, but having moved out I wasn't entitled
to it until 18. I had to work full time to afford rent. My body
couldn't take it. I had as many days off sick as I had at school and
that was too much to be able to hold down a job. I bounced from one
meaningless job to another, under constant emotional and mental stress
of not being able to afford rent and being terrified that I would have
to go back to the mother and enduring more years of abuse.
I had online friends at this time as I had discovered the joys of the
internet and how much friendlier people were when they didn't see you
faking your way out of physical jobs on a daily basis. I met up with
one of these friends in real life and we ended up falling in love
after that. He knew about my situation trying to make rent, but not
about any of my physical problems. I was still far too ashamed about
my own laziness and the lies I came up with so I wouldn't have to do
He convinced his mother to let me move in with them for a VERY low
rent and when he made me the offer I happily accepted. It meant moving
about an hour and a half away from where I was but I was giddy with
excitement nonetheless. It took me a while to find a job in my new
town as I had no 'local experience' and a pretty poor work history of
jobs changing every couple of months. And no qualifications other than
very low GCSE grades. But my boyfriend was happy to continue paying
rent for me out of the JSA he was claiming.
A while later we moved out of his parent's house into a nearby flat.
My boyfriend had a full time job and I was using all my energy to keep
the house clean and applying for roughly 20 jobs a day. Whatever I
could find that I might possibly have qualifications and experience
for, I applied for. Anything that didn't require any experience or
qualifications, I applied for. It still took me over a year to find a
job. By that time I was 18 and would have been eligible to apply for
benefits, but I was adamant that I wasn't THAT lazy and when I was
offered a data entry job I took it. It only lasted a few months as my
typing skills were too good. I was too fast at it and ran out of work
for them to do. I had been clearing up an eight-month backlog.
I found another job fairly quickly - as an audio typist/medical
secretary working in mental health. I was quite pleased with this as
it was an NHS job, had good prospects for promotion and a career etc.
I'd started to feel twinges in my wrists and fingers when typing for
too long, and dealing with 'writer's cramp' but I figured this was
fairly normal. I walked the half hour to my job and back every day,
despite how much it pained me to do so. I kept telling myself that it
was exercise, and like everybody kept telling me - I was just lazy and
if I exercised more things wouldn't hurt. I kept telling myself this
over the next few months as the daily walks got more painful and the
typing left me unable to use my hands for the rest of the night after
I came home from work. Surely I would get my second wind soon. This
would start getting easier.
I started longing for the weekends - not so that I could go out
drinking with my friends as everybody else my age was doing, but so
that I could spend two whole days in bed without having to move.
I took more and more days off sick from work so that I could lie in
bed and rest. My life consisted of working and resting, there was
nothing else. My boyfriend had to force me to eat in the evenings
because if I was left to my own devices I wouldn't bother - it was too
much effort and too painful to bother with.
I was in such agony from my wrists, hands and fingers that I had to
take breaks every five minutes at work. It was five minutes of typing,
ten minutes of resting, repeat all day long. My work started to suffer
but I had been so good at my job that I was ahead of myself anyway,
nobody really noticed the drop.
I kept telling myself that it would get better and I just had to work
through this. That everybody else was working full-time without
anywhere near as many breaks as me, AND managing to do housework and
have a social life. That if I couldn't even work full-time without
taking at least one day off sick a week then there was something wrong
with me; I WAS as lazy as everybody kept telling me I was.
It didn't click that maybe my problems were more physical until my
boyfriend tried to hold my hand once, on a bus full of people, and I
burst into tears because the act of holding hands was hurting me so
much that I could no longer wear my happy face even in public.
I went to the doctor at that point, who started investigations and
advised me to stop working. I couldn't bear the thought of being even
lazier than this and having to claim benefits, so I continued working
despite the agony for another three months. By that point I'd done so
much damage to my wrists that they will never be the same again. Us
EDSers don't heal very well. I can still type to some extent but I
need to take far too many breaks for far too little writing and what
little I do stops me being able to do any other kind of work.
All of my joints hurt. All of my joints sublux and dislocate. I can't
walk very far, on days when I can walk at all. There are very, very
few activities I can do with bad wrists. When 'normal' people injure a
joint they rely on other joints to over-compensate. My upper body
cannot compensate for my lower body's problems. I can't use a cane or
crutches or self-propel in a wheelchair because of my wrists. The NHS
won't give me a power chair. I'm housebound until someone has the time
to push me around in my manual chair.
My cognitive problems and inability to concentrate coupled with social
anxiety and trouble communicating mean that claiming benefits is a
harrowing, terrifying ordeal for me. The physical problem of not being
able to fill in the forms myself is the least of my problems. The
errors in the system of lost claims and bank account numbers and
countless problems where they don't even know what the problem is
overwhelm me. I'm unable to use a phone without crying and having
panic attacks most of the time. Anytime anybody questions me about my
abilities I break down - it's so unbelievably hard not to scream that
I'm a lazy piece of scrounging scum. I put off doing things that need
doing because I don't want to cope with the tears and the break downs.
I then forget that they even need doing until the next time I dare to
look at my bank account and break down worrying and crying about how
to pay rent and buy food.
I am currently on low rate care and no mobility of DLA, despite
needing help with pretty much all my daily activities and not being
able to walk most days and only as far as the corner shop on the days
when I can (pointless, as I can't carry any groceries home). I tried
to claim ESA but failed their medical assessment with only 9 out of 15
points. I had a look at the points system online and by my
calculations I have a combined total of 72 points from both physical
and mental problems but they would only give me 9 points for not being
able to use a pen. I'm trying to claim housing benefit but am
wallowing in bureaucratic nonsense that I don't know how to handle.
I am living in poverty. I have always lived in poverty except for that
one year when both my boyfriend and I were working full-time. That
year was such a living nightmare for me that I couldn't even enjoy the
financial benefits of being able to afford take-away when I couldn't
manage to make myself food. I'd rather not eat but live in a world
that consists of slightly more than just pain and sleep.