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Celebrating Irlen Syndrome Awareness Week by sharing my story

Oct 24, 2014

Today marks the last day of Irlen Syndrome Awareness Week, which I just found out about, and I wanted to participate in spreading the word.

What's that? You've never heard of Irlen Syndrome?

Well Lucy Lawless, aka Xena Warrior Princess aka Diane Swanson has heard of it.


About two months ago I took on a new project that would require me to work onsite with my client. We consultants know that this is a grand opportunity to connect with your clients, really hear what they're saying and assess and capture the whole picture, giving you, the consultant, the most ideal opportunity to do your best work that is directly applicable to your clients' needs.

Being the seasoned communications professional I am, I recognized all of this immediately and was excited to jump right in, building relationships and giving my fresh perspective on the organization's toughest communications challenges. Unfortunately, I didn't expect that one day in I'd be stricken with blurred vision, a monster migraine and vertigo.

My seat was in a narrow room that is floor-to-ceiling white, which immediately caused some visual problems for me. I've been getting migraines since I was 25, about the time I was diagnosed with hypothyroidism, and I always assumed the migraines were associated with that. I learned to manage my headaches with Excedrin and taking short breaks to go outside in natural light during my work day, to give my eyes a break and recharge. I know fluorescent lighting can sometimes set off my migraines, so I'll often request a glare reducer for my computer screen and bring in a lamp if I have my own office and can turn off the overhead lights. And I always make sure to get my desk ergonomically set up so I don't add strain to my neck throughout the day.

Granted, I was breaking a few of those rules the first day, but something was different. Streams of light surrounded my periphery, especially around light sources, like my computer screen. The room was turning upside down and the words on my screen were blurring. Every cell in my body felt as if it was contracting, squeezing, trying to escape this invisible force that was encroaching on my brain.

By the time I had a vision of myself crawling out of the room, collapsing and awaking on a gurney with my new boss, client and all my teammates gathered around me in shock and concern as the handsome doctor shook his head and said, "Classic case of a phantom brain tumor," I innately knew that A) My brain was still working just fine; and B) I needed to get away from the white room.

I told my boss I wasn't feeling great and I was going to finish the work day in the lobby near a window. Ten minutes later the whole episode had passed and I felt normal again.


During those 10 minutes I googled my symptoms and found an interesting website, irlen.com, a site dedicated to Irlen Syndrome. And 10 minutes into exploring the site, I was convinced I had Irlen Syndrome. 

(Please note that I do not condone googling symptoms and self-diagnosing major health problems. I have a neurologist that I check in with regularly for my migraines, and if the information on the the website hadn't been so aligned with my specific combination of symptoms and visual issues, I would have called him the next day to get in for an appointment.)

Irlen Syndrome is a visual processing disorder that affects 15% of the general population, 50% of individuals with reading and learning difficulties and 30% of people with ADHD and autism. Irlen Syndrome has also been linked to traumatic brain injury in athletes and others.

According to the website, Irlen Sndrome is caused by a defect in one of the visual pathways that carries messages from the eye to the brain. This defect causes a timing fault in processing visual information. Filtering out specific wave lengths of light helps the pathway to function normally.

For me, black and white patterns like houndstooth and stripes set off the same feeling I had in the office, but on a much smaller scale. I realized, by sitting in a white-saturated room and staring at a screen with black letters, I had essentially been forcing my brain to endure looking at houndstooth for six hours. 


The Irlen website has a test you can take to see if you might have Irlen Syndrome, and you can also change the color of your screen to see if a particular color helps your brain restore the defective pathway. (Mine's purple.) (In fact, when I change my screen color to purple, I instantly have the sensation that cool water is rushing over my face.)

You can also take a look at some examples of how people with Irlen Syndrome see common things. I identify with most of these, especially the "rivers" appearing between words on a page:





After I took the test, tried out the screen colors and watched the video, I realized I've been dealing with these visual problems for most of my life. The migraines may have started when I was 25, but smaller manifestations of Irlen Syndrome have been making me feel dizzy, lethargic and nauseated since I was a child.

Founder Helen Irlen says, "Millions of people worldwide are suffering from Irlen Syndrome and not finding answers because they don't know this issue exists. Simply wearing specialized tinted filters can completely change how a person functions on a day-to-day basis. We have an obligation to educate the public about the problem and this easy solution."

If you think you might have Irlen Syndrome, you can get tested at an Irlen Center. I have not, but I've found that just being aware of it and understanding what's going on with me has helped me improve my working environment. I requested a larger monitor and brought in a lamp to break up the harsh fluorescent light of the overhead lighting, and my boss found me a new place to sit that isn't nearly as stark as the other office.

I think more people than realize it or are even reporting it probably deal with Irlen Syndrome, and it's something that doesn't have to impair you all the time. We need more research and technology to made everyday life easier and more comfortable for those of us afflicted with it. One thing I'd love to see is Microsoft Office and Google offer a screen color option similar to that on the website. What a simple fix to a crippling problem!


Spread the word and let me know what works for you!