Don’t call me stupid: Dyslexic traits in long-term ME?

The other night I stayed up probably far later than I should, to watch a documentary on BBC3 called ‘Don’t Call Me Stupid’. Following the former EastEnders actress Kara Tointon as she attempted to gain a deeper insight into her Dyslexia, the documentary proved to be useful, and indeed, thought provoking for me.

Dyslexia has never been that far out of my sphere of experience – my Dad is dyslexic, albeit in his youth it was indeed the norm to call dyslexics ‘stupid’, put them in the bottom stream and in my Dad’s case, deem them too dumb to learn to play a musical instrument. He soon discovered that the only way to survive was to develop his own coping skills, which he used successfully to climb the corporate ladder. So it was not really ever a big deal in our household.

When I was 23 I was starting a new university course, a Postgraduate Diploma, following completing my Undergraduate degree the year previously. I applied for Disabled Student’s Allowance on account of my ME and unlike my undergraduate course, where I received the allowance without fuss, this time I was sent for an assessment. This involved speaking to a nice Disability Support Co-Ordinator at Middlesex University and going through my medical history. I was asked to read some passages, to assess my poor eyesight when the man stopped me.

“Are you dyslexic?” He asked.
“No.” I replied. “But my Dad is.”

He went on to explain that not only could dyslexia run in families, it could also be a permanent side effect from having meningitis. Well, that sounded plausible – I’d already lost part of my hearing and vision to meningitis, why not have my brain rewired too?

He suggested I had an assessment and arranged for an Educational Psychologist to come to my University to assess me. This was quite an exciting event for me. Prior to my interest in Health Psychology, before I had quite so many medical conditions to contend with, I had wanted to be an Educational Psychologist, studying at Glasgow Strathclyde University. Having one come and show me exactly how they performed their assessments was too good an opportunity to miss!

Telling my Dad about the outcome of my assessment and pending appointment with the Psychologist my Dad revealed something that I had no recollection of, “We thought you might be dyslexic when you were younger. The school spoke to us about it.”

Thinking back, I never thought it was odd that I sat in the classroom at break times doing handwriting drills, or that I was taken out of class for remedial tuition. The remedial literacy sessions were short lived, but the maths ones went on a bit longer. I was, and still am, terrible with numbers. Ask me to calculate something without a calculator and I may well end up in tears. The numbers would always just jump all over the place and I could never keep my columns straight, even when using that nifty large squared paper, meaning my answers would always be wrong as I added the wrong numbers together.

I underwent my assessment and the psychologist told me that she did not think I had dyslexia, because my verbal IQ and reasoning was too high. However, when my visual-spatial IQ score was added to the mix my overall IQ dropped by 10 points. From this the only thing she could infer was that I had some form of non-specific visual processing disorder.

Bear with me, I have a point. I will get to it, eventually!

Watching the documentary, Kara described how she viewed words on a page, in pieces, some parts of the page brighter than others and so on. Exactly how I see large portions of text. If I am faced with text like that I struggle to take in any meaning and instead get sleepy. It takes me forever to read books. I think I have read about 3 books in the last 12 months, none of which have been particularly complicated reads. I struggle with Harry Potter, to give an indication of my reading abilities. When I write things, it has always been with a distinct conversational tone. People who know me have said they can actually hear me saying what is written down, and this is how I manage to overcome my writing difficulties. For much of my Undergraduate degree, and later my Diploma, I enlisted my Dad to be my scribe – by dictating my essays to him I could have them written in the space of a few hours. When I sat and typed them myself the task could stretch to days or even weeks. Academic writing is much less conversational and I found it extremely difficult to cope with.

In the documentary, Kara went on to get green filter lenses in a trendy pair of glasses which helped her to read more efficiently. I have also been tested for this related condition, known as Irlen syndrome, and found that I require orange filters in order to read effectively. Unfortunately for me, my current high index prescription precludes coloured lenses, but it has always been on my list to get a pair of coloured lenses as soon as my prescription is more normal following my cornea transplant. The filters stop the words shimmering on the page, and take away the bright and grey spots. You can even download handy programmes for your computer to tint the whole screen, or change the default background colour from white.

Managing through colour is not exactly a new thing for me though. As I said earlier, my Dad developed his own coping skills. I was the same, although I didn’t realise it for many years. What started off as simply switching between pen colours to differentiate between paragraphs more easily soon became full on colour coding. When everyone else would have 1 or 2 pens on the desk at school, I would have at least 10. Blue, pink, green, purple, turquoise, red, black, orange, and every colour of highlighter I could get my hands on. I got a reputation for being ‘anal’. By the time we reached 6th form I eschewed the traditional wide-ruled pads of paper my friends used for narrow-ruled, or better yet, small-squared paper pads. This kept my writing tidier on the page. I also switched to using block capitals for everything. To this day I get complimented on my neat lettering, a result of my endless handwriting drills at primary school. But I am at my most comfortable when writing in block capitals. I never really realised the extend of my ‘coping mechanisms’ until they were all pointed out to me by the psychologist.

But as I get older, I find my problems aren’t as easily overcome. Reading a bedtime story to my son can sometimes be painful in its delivery as I stumble over the words. I used to tell myself it was because of my vision, but even with my nose touching the page I still read in an extremely stilted manner. I am always happy to ‘read’ him his favourites, because I know them by heart and don’t even need to try and read them. Then I can put in expression and do different voices and all sorts. I mentioned earlier I haven’t read many books in the past year. This is because I have to psych myself up to even start reading, and then can only manage a few pages at a time before I switch off again, even with the most gripping of stories. My sister can glance at a page and take in everything in seconds, she has a photographic memory. I find myself going over each sentence two or three times each much of the time.

Bearing in mind that my problems seems to be increasing rather than being managed, and also that whilst my verbal IQ is of such a high level when my standard IQ just falls short of MENSA acceptance levels (it used to be higher, I knew I should have sat the entrance exam when my Dad told me to!) due to my complete lack of visual-spatial ability, I am wondering if this might be an effect of having long term ME?

I see many dyslexic traits in the written communications from fellow PwME, which cannot all be simply put down to ‘brainfog’ or ‘lack of education’ (by which I mean that many PwME of my age have also been unwell since a young age and may have had a sporadic education due to periods of ill health), because they appear almost universal mistakes. A lack of spatial awareness or ability is also commonplace in ME/FM and associated conditions – hence I frequently walk into doors or doorframes when aiming for the space inbetween, or why I cannot manage to use escalators without looking like an idiot (in fact, I’ve never been able to use escalators normally, my parents used to despair when it would take me 10 minutes to get on one, usually close to tears and panicking), and I know I’m not the only one to do that! So do we have impaired information processing as a result of our condition? Is this syndrome affecting our neural plasticity? In other words, is it rewiring our brains beyond the accepted ‘brainfog’?

I’d love to hear from anyone else long-term sick to hear your viewpoint on whether these things may be related. Or not. Have you had problems that have developed or got worse since you became unwell? Do you struggle in the same ways? Differently? Do you also employ coping and management skills to overcome these difficulties?

Whatever the case, the documentary is well worth a watch – “Born Survivors: Don’t call me stupid” is available on BBC iPlayer until Thursday.

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