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| Not my brain |
It's
no secret that I sustained a head injury at birth and that I've had
memory difficulties my whole life. Something that I haven't
particularly discussed, is that I wasn't properly diagnosed until I
was 26.
I
had visited psychologists throughout most of my life. Each time, the
doctors- from what I could remember- gave me little bits of
information about my condition. Most of the time these were
sub-standard, partial assessments that didn't actually do anything to
move me forward in any way. And, due to the problems themselves, I
couldn't follow what was happening with these psychologists and their
diagnoses. At 16, when I got to college, I was under the impression
that I was straight-up thick. None of the previous assessments had
correlated, and nobody the assessment had been sent to (special needs
teachers etc) had asked me about it.
As
things started to get difficult in college, my tutor thought that the
problem could be dyslexia. I didn't believe him, but it didn't occur
to me that I had psych assessments at home that would not only
contradict the idea that I was dyslexic but would explain, to a
certain degree, what the problem actually was. Hence, he guessed at
dyslexia, a college support tutor didn't know any better so agreed
with him, and them at university some years later a psychologist also
didn't know any better so ran few basic tests and labelled me with
'visual memory / dyslexia.'
I
carried this label for a long time. Between 16 and 25 I knew that
there was a problem. I knew it had something to do with memory, but I
felt like I was blagging the system by telling people I was dyslexic.
Spelling was one of the only things I could do throughout school. A
number of people ran tests on me and not one of them realised that
the problem couldn't possibly be dyslexia.
By
the time I was 25 I'd stumbled onto an employment scheme for adults
with disabilities, and, surprise, I couldn't do the job. The
'dyslexia' was causing problems that nobody (other than me)
predicted. The scheme sent a support worker to sit with me in the
office. We'll call her JM. JM had a degree in psychology, and she
started to help me put together systems that would help me in the
office.
Within
a couple of sessions, she'd got to the root of the problem. I wasn't
dyslexic at all. I'd been misdiagnosed. Had I ever had a knock to the
head? She asked. I showed her the pretty large scar on the back of my
head. That's what it will be, she said. You've got memory
difficulties from that head injury. You need to get reassessed, she
explained. She mentioned The Beeches, an NHS department which, at the
time, specialised in memory issues.
So
I went to my GP. We'll call him Dr W. I asked him for a referral to
The Beeches, explaining that the problems with my memory were causing
a lot of problems and having an inaccurate label of dyslexia was
making things a lot worse.
Dr
W claimed that the Beeches was just 'for old people,' and that they
wouldn't help me. He made a referral to some other department.
I
went back to work to speak to JM. No, she said, your GP is wrong,
they work with adults of all ages and they're waiting to see you.
I've spoken to them, and all you need is a referral from your GP.
So
I went back to my Dr W, and asked again. Okay, he said, I'll make the
referral but you won't find the answers you're looking for at The
Beeches.
I
went to the Beeches, and the psychologist I'd been booked in to see
wasn't there, so another psychologist had taken his place. He asked
me a few basic questions about my background and education, asked if
I could remember his name (I gave the name of the doctor I'd been
booked to see, not his), made a few notes, and ended the session. He
said he'd be in touch.
A
week later he sent me some notes from the meeting, which I still
have, which contained loads of inaccuracies. There were things
detailed that I never said, he'd got the age difference wrong between
myself and my sister, he clearly didn't understand how GCSEs worked
and couldn't grasp that English Language contained an additional
score for speaking and listening that didn't count as a separate
GCSE, and of course he hadn't actually ran any tests on me so what
had been sent wasn't anything like a psych assessment.
After
this I went back to the same GP, who forwarded me to other, equally
bemused psychologists who couldn't grasp that I wanted them to test
me to get to the bottom of the problems that I had.
Around
a year later, in work, I spoke to a course trainer who was delivering
a disability awareness course. I think he was called MH. I explained
my predicament: A job I didn't understand, a support system that
didn't understand me (JM had left the organisation and her colleagues
were still clueless) problems with my family, a meagre part-time
wage, no benefits, a label of dyslexia that I don't have, memory
problems that I don't understand, and issues with my social life and
relationships. I felt (correctly) they were all connected. Could he
help?
He
gave me his email.
The
same day, I dropped him a line thanking him for the training and
asking if he could help. He said he'd get back to me. I've heard that
before, I thought.
The
next day, though, he called me back. He'd got me an appointment with
a neuropsychologist called GW. The name rang a bell.
I
met with GW- we'd previously met through work over the years- and she
agreed to properly assess me and rule out all the conditions that
people wrongly suspected I might have. Over a few sessions she tested
me properly, homing in on the issues that I had and ruling out the
ones I didn't- dyslexia, dyspraxia, autism, instabilities in
character- all these were thrown out and I got a solid assessment for
short term memory difficulties. While these sessions were taking
place, as well as testing, we'd look at areas of my life that needed
improving, and one session at a time, I started to develop coping
strategies.
Years
later, after these sessions had passed and I'd met with a handful of
other professionals too, all the advice I'd received still wasn't
enough. It was 2014 and I was sure I had depression. I still couldn't
talk to women. I was falling out with a lot of friends and
shouldering the blame for this. I needed proper advice. I went back
to Dr W. His advice was that there 'wasn't really any support out
there' for depression.
So
what did I do? I went to Manchester to the Samaritans on Oxford Road.
What the hell else was I going to do?
The
guy I spoke to was really helpful. His advice was to try a different
GP at the same surgery. My GP should have forwarded me to services
that definitely do exist. I phoned, and booked an appointment with Dr
W2. Straight away, Dr W2 put me on a waitlist for psychological
therapies. It took 7 months for the sessions to come around, but at
least I was on it. The sessions were really helpful. They just didn't
last long enough, but that's another issue. Now, for referrals an
general appointments, I only deal with Dr W2.
It
pains me to think that, in 2008, I tried to meet with a psychologist
that could advise me, but I didn't manage to until the following
year. (It's more so that she had meetings in the building I worked
in.) Dr W gave me further problems after meeting with GW, when I'd
been forwarded to Social Services and things had taken a backwards
step. Dr W treated me like a hypochondriac. If I'd have just tried a
different GP at that point, I could be so much further ahead by now.
I
don't know whether others have experienced this, but if two NHS
employees do the same job, and you go to them both with the same
problem, they (theoretically) should give you the same advice and
make the same referral (not that they should need to). But they
don't. Take it from me. If you hit a brick wall with one, get a
second opinion from another. You may find that immediately you'll get
a referral that moves you forward.
