Irlen Syndrome Awareness Week

It's Irlen Syndrome awareness week and so this is a great opportunity for me to discuss this virtually, as yet, unheard of disorder, and share with you a piece of my daily existence.

Irlen Syndrome, sometimes referred to as Meares-Irlen for the two teachers who discovered it individually in New Zealand and the United States, is a visual perception processing disorder. It is generally understood to be a problem with the brain, or how the information is conducted from the eyes to the brain, and not a problem with the eyes themselves.  

An estimated 12-14% of the North American population suffers with Irlen Syndrome and since it is a spectrum disorder, we all suffer differently, individually and often excruciatingly.  Irlen syndrome manifests with visual distortions, light sensitivity, issues with depth perception, physical discomfort, attention and concentration challenges and writing problems.

I was diagnosed with Irlen Syndrome in 2010. At the age of 33 I was well into my adult life full of work and bill payments. As a Massage Therapist I had the privilege of treating many people over the years, with an abundance of unique diseases and disorders. One day a client appeared on my table and shared with me a certain set of symptoms which he had been experiencing and which had been diagnosed as Irlen Syndrome. As he was sharing I remember interrupting him and asking the question, "But doesn't everyone see that way?" The truth of the matter was, and still is, no. Not everybody sees the world the way someone with Irlen Syndrome does.

As a child I was plagued with headaches, fatigue, stomachaches and a general feeling of malaise. I would rub my eyes until they were blackened and it looked as though I had been punched in the face. The optometrist suggested I wear sunglasses to school and at the skating rink in order to reduce the strain that the fluorescent lights seemed to place on my eyes. It was, after all, the 80's, and Irlen Syndrome had just been discovered. Nobody knew what it was and they certainly didn't know that I had it. Sadly, because of this, I was ordered to remove my sunglasses by my open-minded teachers and coaches and eventually learned to suffer silently at school, and openly at home.

Unlike most of my Irlen cohorts I loved reading and read voraciously, mostly in near darkness. My mother would find me curled up in bed, at night, reading my latest favourite story and ask if I didn't want more light. I always said no. Reading by the light coming in from the hallway was perfect. It was my favourite place and time to read.

As the years passed I learned techniques to help me read easier. My father taught me to use a ruler to help me keep my place while reading textbooks and non-consciously I sought out dark and cozy study places. I avoided extremely bright, hospital-esque, places and found comfort in tungsten lighting. I graduated high school and entered university and with the age of computers and technology rapidly gaining speed, my headaches turned to migraines with auras and vision loss.

I struggled to complete my exams and grew more and more frustrated that I was unable to see reflected, in my grades, my knowledge and understanding of what I had learned in my classes. I worked very hard and developed excellent study habits and eventually completed my degree, very much in need of time off from school. 

Graduating with a Bachelor of Science degree in Psychology was not the best stepping-stone to a booming career, and while I planned to complete my Masters and PhD, I needed a break. A few years later I found myself changing direction and studying Massage Therapy. I was on a completely different life path than I had intended and this path would, for the next 10 years, keep me in the dark, literally. Adaptation for survival is a beautiful thing. 

Then one day I learned of Irlen Syndrome. 

On that fateful day, after my client left, I called an Irlen Specialist who assessed that it was worth my time to be tested. After a grueling 2 hour appointment I had an explanation for a lifetime of symptoms and behaviours that I assumed were normal. As it turns out I have a severe form of Irlen Syndrome. The visual distortions that I see when I read, such as rivers, blurry, halo, shaky and swirl, that are worse under fluorescent lighting and on computers, the headaches, fatigue, muscle tension and difficulty hearing under bright lights, the struggle to finish exams on time, these are not normal things. 

Click Here to See Sample Visual Distortions Experienced In Irlen Syndrome

My difficulty judging depth perception, causing me to be horrible at numerous sports, as well as my epic failures in parallel parking, all stems from having Irlen Syndrome. For me it's not because I didn't try hard enough, which is what I was constantly informed, it's because my brain works differently.

Going back to school as an adult was, on some level, terrifying. I was worried about wearing my dark glasses in class because I knew I was going to stand out. I was worried about experiencing the same challenges I experienced before. But you know what? It all worked out. Was it difficult? Yes...let's just say that studying the second semester of Organic Chemistry, taking advanced Inorganic Chemistry and Physics is never easy especially after being out of university for 12 years. Now I'm in naturopathic medical school with an intense and grueling schedule! But the emotional stress that I was worried about quickly disappeared and I love learning more than ever. I wear special glasses, designed to filter out the specific wavelengths of the light spectrum that irritate my brain. I print everything on blue paper because it lessens my distortions and I use coloured overlays when reading textbooks. These things help but they don't fix my condition. 

Some days are better than others. Irlen can change depending on the chemistry of one’s body and there are many factors that can influence its severity. On my good days, the distortions are limited to words and paper. On my bad days the distortions move to my surrounding environment and make for a pretty interesting, albeit nauseating, experience, with moving trees and pavement. It’s on these days that I have to pick myself up and remind myself of my motto: that having a disability isn’t something that I can control, but how much I allow myself to be “disabled” by it, or because of it, is something I can.

Life with Irlen Syndrome isn't easy, but I believe that life isn't supposed to be easy. It's supposed to be challenging and raw and real. What we do with that is what makes it beautiful.

All My relations,

Mandy

If you or someone you know may be suffering from Irlen Syndrome please visit this website for more information and get help today.

The Irlen Institute

A Can Do Attitude and Filter Glasses