It’s confession time. I love tatting. But sometimes I don’t like tatting. Shocking? This from the lady who is always saying how easy and fun tatting is, and just give it a try. Well, tatting is easy and fun, but sometimes my brain isn’t.
All right, collect your jaw and let me explain. I have always been very sensitive to light, crouching over books in school to create shadows, and reading in dim light so that my dad was always turning lights on for me (notice I said on, not up). I am also a very good reader but have always been exceptionally slow, and no speed reading course or vision therapy ever helped. Then a few weeks ago, when discussing certain reading difficulties in one of my teacher education classes, I ran across something called Scotopic Sensitivity Syndrome, or Irlen Syndrome, and was immediately like, “That’s me! That’s what’s been going on all my life! OMG!”
Three days later I was at the Irlen diagnostic center in Albuquerque and let them torture me with tests for two and a half hours, and walked away with a whole new perspective on life. Literally. (Okay, so I wanted to crawl into a dark hole, close my eyes and wait out the headache, but I also had a huge smile on my face.)
Irlen Syndrome can manifest in a few different ways, through sensitivity to lights (especially fluorescents), visual distortions, and depth perception problems. I am on the severe side of the spectrum of both the visual distortions and light sensitivity, and have moderate depth perception issues.
DO YOU SEE WHAT I SEE?
Could you read a book scrawled in marker on a carโs headlight? That’s what reading is like for me. Okay, that’s a bit of an exaggeration, but not by a lot.
When I look at a page of text, only the one or two words I am focusing on are clearly visible; everything around them is out of focus. However, the spaces between words on the whole page are intensely bright and blend together into rivers of light that flow down the page.
The space around separate words, too, is excessively bright and flickers intermittently, causing the shape of the letters inside words to run together and become confused in each other. An r and n together become m, l and o become b, o becomes c and c becomes o.
Whole words randomly disappear out of the line I am reading or move from another line into the one I am trying to decipher. As you can imagine, this makes the meaning of sentences quite confusing at times. Plus, since I can only see one or two words at a time, when I get to the end of each line it is a complete guess whether I will end up at the beginning of the next line, the one before, or the one I just read.
Sometimes I don’t even realize I’m rereading the same line till I’m half way through it, because the act of reading takes so much concentration that I often don’t take in the meaning of the words the first time through, especially if I am tired. All this makes the reading process a very tiring activity, and the more tired I am the worse the distortions become. It’s a bad cycle.
Numbers are even worse. They jitter around on the page so that I have to concentrate very hard to tell them apart. Numbers in a column or a row jump back and forth, never staying in the right place. To all of this add another layer of distortion: when I look at text, I don’t see one set of words but two. The duplicates hover around the main text in a vivid glowing white, like the reflection you see after getting hit with a flash bulb.
Lines are the worst, like in reading music. I played violin for four years and memorized everything. I memorized well enough to get second chair, second violin in my middle school orchestra for two years straight (in a section of about 40 violinists) but could not for the life of me sight read a note. I just figured that the notes crawling around the lines like ants and the spaces pulsating between lines was what everyone saw. That’s what you saw, right? Why could everyone else read the ants and I couldn’t?
For that matter, why could I easily add lists of three column numbers in my head but not on paper? To this day, I always add numbers at least three times, even when using the calculator, because the numbers move—both on paper and on the calculator buttons. In school, I could explain any math or science concept you could throw at me, and tell you exactly how to solve the problem, but often got it wrong when I wrote it down. SO frustrating.
Due to Irlen, I struggle with many everyday activities that most people take for granted: reading a book or a printed page, using the computer, concentrating on the professor in class, doing homework, writing in a straight line (even on lined paper) and copying from the board. Even dialing a phone number, walking around furniture without running into corners, catching a ball (what, you mean I’m not supposed to jump away?), and driving on a sunny day: sunglasses required. If I’m tired, the white and yellow lines on the road glow at me even at night. And yes, reading tatting patterns and counting stitches. All of this gets harder, more painful, and more tiring as I go, because the visual distortions get worse the longer I do it. These are only a sampling of things that scotopic sensitivity makes difficult or painful for me, and I finally know why!
WHAT IRLEN SYNDROME IS
As I understand it, scotopic sensitivity syndrome is a sensory perceptual disorder in which the brain does not correctly interpret certain visual information. The eye may work fine, but some signals from the eye do not arrive in the brain intact or on time, and the brain tries to compensate for the double image by filtering out bad information, but ends up distorting or confusing the location and appearance of images.
Scientists aren’t entirely sure yet why this happens, but one of the leading theories is that it has to do with the brain’s perception of certain wavelengths of light. While there is still something of a debate in the scientific community about what causes scotopic sensitivity and even if it is real, it has been gaining acceptance for 30 years and is now recognized by most of the scientific community. Personally, I’m sold. I’ll tell you why.
Helen Irlen first identified these visual distortions in the early 1980s (view some samples of distortions) while researching adult remedial readers—specifically, college students who were good readers, like me, but still had a lot of difficulty doing it. She also identified a simple and effective treatment: filtering the problem wavelengths through a specific color—because color is a wavelength! The waves cancel out, or reinforce, or something like that. See? See? Nifty hunh?
While not a cure, placing a colored overlay on the text or wearing colored glasses effectively reduces or eliminates the distortions for most people, including me! When I left the Irlen diagnostic center I had a set of colored overlays in my eager hands. At the end of the test, they went through a whole slew of colored overlays, and combinations of colors, and figured out which one worked best for me (different brains need help with different wavelengths). When I put them over the pages they had just tested me on, the words, pictures and diagrams that I had to concentrate so hard to decrypt a moment before suddenly stopped moving, pulsating, and swimming.
It was a deus ex machina. Let there be colored light. And there was colored light. Let there be a stillness in the light. And there was a stillness in the light. And the stillness was good.
I’ve been using the colored overlays since then, and they have helped immensely. I put them over every book, printed page, even my computer screen. When I read now, the flashing and pulsating lights go away, the text stays still, and my field of vision expands from one or two words wide to seven or eight. Which means I can see more of the text, and instantly read about twice as fast! I still have to guess which line on each carriage return, but I am comprehending more of what I read and don’t tire out nearly as quickly. I suspect that with practice reading static text it will get even smoother.
MY IRLEN OVERLAYS
Are you curious what my new favorite color is? I wonder if you can guess it from reading this very page. When I set up this blog I knew I didn’t want a white background (way too bright) or a “designer” background (too many elements to move around) so the only question was which solid color to use. As I was playing around with lots of colors, this deep teal was by far the easiest for me to read, so you got stuck with it too. It turns out that this is very close to the color of my overlays.
Do you like the site’s background color? Is it easy or difficult for you to read? Is it too dark? I’d really appreciate some feedback. It is only in the last few weeks that I am realizing that the rest of the world doesn’t see everything the way I do (blindingly bright), and that something that dark might not be wonderful for everyone. Here’s a secret. Even with the dark background, I still read it with my monitor’s brightness set to absolute minimum.
Here is a book with my new Irlen overlays. My color is a deep turquoise, almost a teal.What you are seeing is a set of three colored overlays taped together to make the color that works best for me. I have a fourth layer I can add in fluorescent lighting (e.g. in class) to make it even darker. Why?
I hate fluorescent lights. Can’t stand them. They are like daggers in my eyes after only a few minutes, making all my visual distortions worse, making it difficult to concentrate, and giving me constant headaches and recurring migraines. Almost every store, classroom, and office has them, and most other public places. One of the things I love about working in homes is the complete lack of fluorescent lighting. Apparently, fluorescent lights leave out some wavelengths and spike in others, making vision hell for people with scotopic sensitivity syndrome.
HOW I’M MAKING IT BETTER
There are a few things I can do to cope with SSS. Obviously the overlays to put over printed text and the computer screen.
Irlen also makes glasses that will help me filter the light for everything I see and not just while reading. Objects too will stop flashing and glowing, the edges of furniture and location of flying balls should become clear, and I should be able to open my eyes under bright lights and fluorescent lights without the intense pain in my eyes, headaches and migraines. I’m saving up for my glasses and will let you know how they go when I get them.
Here are a few other suggestions from the Irlen Institute which have helped me:
- Wearing sunglasses, obviously. Been doing this for years.
- Wearing brimmed hats to block light coming in from above the sunglasses. I’ve suddenly become a fan of hats.
- Writing and printing on colored paper. The colored background works a lot like the overlays to reduce distortions. I’ve been using blue notebook paper and teal printer paper because those are the closest to my overlays that I could buy. Even those I had to special order to get a single color. I could only find variety packs in the stores.
- Writing with colored pens, especially on colored paper. The lower contrast helps minimize the intensity of the distortions.
- In the same vein, one of my professors likes to use the glossy white dry-erase board (ugh), and she agreed to use colored markers instead of black to lower the contrast.
- The same professor uses an overhead projector extensively, which is so danged bright. I asked her to put one of the light grey Irlen overlays on it, under whatever transparency she is showing us, and it really helps to reduce the brightness. No one else in class minds and it helps me tremendously. I think it helps a couple other people in class too.
- Sit between fluorescent lights instead of directly under them. It’s not as good as no fluorescent lights, but it does help.
TATTING WITH SCOTOPIC SENSITIVITY SYNDROME
So how does all this affect my tatting? Would you believe that I tat with my eyes closed most of the time? If my eyes aren’t closed, they are usually looking at something other than the tatting. I try to look at what I’m doing only when I’m joining a picot or if I have to count stitches or take something out.
Tatting for long periods is just as tiring as reading, and gives me a headache just as effectively. Reading patterns, with numbers crawling around the page, or reading diagrams, with lines jostling each other and numbers jumping from one line to another, and staring at tiny stitches to count them or pick them out, is not altogether fun.
Which means that I usually can tat for only 20 to 30 minutes at a time, or a bit longer if I take a lot of breaks, so it takes me forever to finish a project. But since I do in fact love tatting so much, I’ve come up with lots of little tricks to make it easier.
The tatting itself isn’t nearly as much work as reading the patterns, so I first laboriously recopy every pattern into my own sloppy handwriting to make it larger and the spaces between numbers greater. Then I very slowly tat one repeat of the pattern, rechecking every number and direction three or more times, trying to memorize it the first time through. Then I try a second repeat without looking at the pattern but still glancing at the first repeat to prompt me, and if I get it right I close my eyes and keep going, rechecking when I need to.
LIFE WITH SSS
It’s not just tatting. I’ve got a ton of these little tricks to get through a whole host of everyday activities, including:
- Typing with my eyes closed. My accuracy, speed and comfort all improve.
- Closing my eyes when waiting for a page to load on the internet to avoid the sudden shift between pictures. (I also avoid movies with frequent scene changes.)
- Reading with one eye closed.
- Reading with the book tilted or at an odd angle.
- Cocking my head to the side to see something more clearly.
- Using a finger to track the words when reading.
- Looking away and then looking back to see if the text or object has changed.
- Bending over books or sitting with my back to the light to create shadows when reading.
- Using a second paper to cover up part of the page.
- Using a bookmark, ruler or second paper on tests to bubble in the right answer for each question. Ditto for recipes and tables of contents where you have to track along a set of dots or across blank space.
- Using another paper or straight edge above the line I am writing to keep my handwriting (somewhat) straight.
- Taking frequent breaks or switching activities frequently to avoid tiring out.
- Wearing sunglasses when driving at night in the city, to dim the bright traffic lights and car headlights.
- When driving at night outside of the city where there are no streetlights and not a lot of cars, when a car approaches me its headlights seem much brighter due to the contrast and can be almost blinding. I steer by focusing on the white line on the far right side of the road and hope like hell the other car stays on his side of the road.
- Covering my bedroom windows with blackout curtains.
- And so much more.
The sad part is that most of this I didn’t even realize were adaptations or compensations until recently. I genuinely thought this was how everyone lived.
I am not a stupid person but there have been times when I felt dumb because I wasn’t able to do something that everyone around me seemed to breeze through. Why can’t I catch a ball, or throw a ball where I want it to go? I’ve had two sets of glasses break on my face from balls. Why is my handwriting so uneven despite hundreds of hours of handwriting practice? Why do I get violently nauseated after only seconds of reading in a car, while my cousins could read whole novels along windy roads?
Why am I such a slow reader? In college, my friends would all be finished with their homework while I was barely halfway through. Or in my education classes now, when the teacher asks us to read something in class, everyone else will be discussing it while I’m still trudging along.
Why did I have to work five times as hard to barely pass every math class when all my teachers agreed I should be at the top of the class? I gave up my dream of going to Caltech and becoming a physicist because I couldn’t do the math, even though I knew the math.
Why can I still not read music after four years of violin lessons and two years of college music theory? I tried to learn piano one semester. Reading two sets of notes at once? Absolutely impossible. Memorizing two sets of notes? Not worth the effort. So many things I could have done better at, learned better, felt better about.
THE FUTURE
I’m not one to dwell too long on could’ves, would’ves and should’ves, so let’s move on. What does the future hold? Now that I know what is going on, and what can help, I can see a whole new world of possibilities ahead of me.
The overlays are helping, but they have a lot of limitations. I really need my glasses tinted to effect the greatest change. Then what? Maybe I’ll curl up on the couch and read a novel for hours straight. Maybe I’ll leave a store or classroom without a headache. Maybe I’ll drive with more confidence. Maybe I’ll stop bumping into doorways.
Maybe I’ll tat to relax at the end of a long day, and read the pattern correctly the first time. Maybe I’ll pull my violin out of the closet and try reading music again. Maybe I’ll read a recipe and add the right amount of flour. Maybe I’ll play catch with the kids. Maybe…
Note: If any of my experience sounds familiar to you, and you think you might have Irlen Syndrome, take a few minutes to complete a self-test and see if you are a candidate for a more in-depth Irlen screening.
I am so happy that you have found out a way to make your life easier. I learned as an adult that I had Dyslexia (like you) in a education class…..
Glad you now know and have “tools” to cope.
Hi Louine, it might be worth your checking into this too. About 2/3 of people with dyslexia also have SSS, like my Mom.
We’ve known for a long time that she is dyslexic but she just got tested for SSS too and has it even worse than I do. They tel me it is strongly hereditary.
Never knew I had this until my youngest daughter was tested , then realised all my 4 kids had it , plus grandkids ..as a child I used to see my father read , with his hand against his head to shield the light , and he said he learnt algebra as a child of 6 , but ‘lost it ‘ by the time he was 12 ….so much of what Fast tatter said is my experience ,and the part where things ‘stopped’ resonated so much when I got my Irlen lenses ..just amazing …I’m so delighted to find this website , thank you so much for all the comments …freezers mum
Thank you for sharing your story. There is going to be someone who comes across this and has that epiphany, that they might have the same problem.
It was heartbreaking to read that you genuinely thought everyone lived like that. I think that is one of the biggest problems with such disorders, that people go undiagnosed because they have no idea that something might actually be abnormal.
Thank you for your support. I was aware that I was far more sensitive to light than most people, but the rest is a revelation. I hope my story does help someone else.
I am so glad you got this figured out finally!!
You specifically asked about the background color for your blog – I have no problems with it at all, in fact I rather enjoy the change from light colored backgrounds. I am one who has set the default background on my computer to be off white rather than bright white.
Cat, thanks for the background color feedback. I’m glad it works for you. I agree, off white is much better.
So interesting! Thanks for sharing. A wake-up call for those with advantages they don’t even appreciate.
Oh wow! As I read this post, I was overcome with admiration for your tenacity. I cannot imagine reading being difficult and then all the other things. I was worried as I read that there would not be any help but by the end, I was relieved for you. It still sounds incredibly difficult but at least there is help.
And then I was thunderstruck to think of all the things you do- these beautiful videos which are SO clear and helpful and your oh-so-patient explanations and descriptions. Holy moly. You are a gem! You go, girl!!!
Michelle, ooh, now I feel all loved and supported. Thank you for your kind words.
Hello, I’m glad you found out about Irlen Syndrom. My Daughter 10 was tested last May for Irlen Syndrom. She was also off the chart in her testing. School was so hard for her and now she is doing much better. Like you she just thought everyone seen this way. Her printing was like a triangle on the page and teachers would make comments like this is garbage and i want to sherd your wirtting peice. She would get so fusterated. She has dark green filters she wheres every where. She still has some trouble with swimming she often bumps into the sides of the pool even with her eyes open. Behavior is also affected by Irlen Syndrom. If she doesnt wear her filters for a period of time she is very cranky and tired. She gets more hungry when wroking hard because her brain is struggling. Even with the filters she needs frequent breaks and snacks.
Michelle, I’m so glad your daughter got help. It sounds like her case is pretty severe. Yes, behavior is also affected by Irlen Syndrome–if it takes extra effort to do everything and your brain is playing tricks on you all the while, it is no wonder there is less energy left for everything else, including the social niceties. I finally get it.
Hi,
I’ve been wearing my Irlen glasses for 15 years now (that’s half my life). Even though it is already so long ago, I still remember how hard it was to live without them. I recognise a lot of what your writing about. And ‘other’ people find it strange that I didn’t realize that I saw things differently. And even more, I remember the day I could finally put them on. What a revelation! My head felt much lighter. Only then, I saw depth for the first time. I lost my ability to draw though. Before, it was easier to put a 2D perspective on a flat paper. This is much harder if you see everything in 3D. But none the less, this is something I can absolutely live without. Now I crochet stuffed animals, and I can do it for 8 hours straight. Sometimes I even forget to eat :). I hope you’ll be able to do the same very soon.
Saar, I wonder if those ‘other’ people are all seeing the same things. Maybe they just assume so since they have never seen through another’s eyes. Maybe they do, but how do they know? I remember a few years ago I showed a page of text to my Mom and pointing out the particularly interesting formations that the “rivers” of light formed on that page. She agreed with me that it was an interesting arrangement, but in doing so she just confirmed that we both saw the same thing, reinforcing the “normalcy” of what we were each seeing. Neither of us realized that wasn’t “normal.” Makes me wonder about a lot of things about perception.
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Thanks for posting this! I had never heard of Irlen Syndrome, until I read this post. I went to the website and did the self-tests and WOW! I answered yes to most questions! I’ve always been hyper-sensitive to light, but didn’t realize how many other problems this sensitivity was causing. I’ve contacted a diagnostician and will get tested as soon as I can.
I like the background color of your blog. On the Irlen page, the color I preferred was the gray. ๐
Jeanne, that’s awesome that you figured this out! You are exactly who I wrote this for. I was hoping someone would read it and recognize themselves in my experience, and finally get help. Please do let me know how your testing goes.
Heather,
Thank you for sharing your story. I am glad to read that you are finally getting some relief!
-Daniel
I have just been tested for Irlen Syndrome today and turns out that I have it quite badly! Most of the experiences you have are really similar to mine so it’s really nice to know I’m not alone. Light contrast and depth perception are big problems for me, although I am fine with ball sports. My depth perception problems are mainly with my feet and how the ground undulates. And when driving I will often fold my mirrors inwards so that I can’t see the reflection of the lights from the car behind me. I am looking forward to receiving my glasses (very dark grey with a slight purple tint) and having everything appear as it should ๐
KW, I am so happy for you that you are finally getting this solved. The undulating ground sounds terrifying. In my experience, the time after diagnosis and waiting for my glasses to arrive was the worst. Before I was diagnosed I didn’t realize how much of my life was abnormal and how much I had to compensate to deal with. Once I figured it out and had hope for relief in sight, everything felt so much worse. I hope your glasses arrive quickly and they make the world normal.
hi there Heather thank you so much for your post I think I have SSS and everything you talked about sound like me.
Lisa, I hope my experiences can help you solve your own problems. Please let me know how it goes, if you get some overlays or glasses. I hope they will help you as much as they have helped me. Good luck!
Enjoyed your post. I have been an Irlen Practitioner for 32 years and it is such a thrill each time I work with an Irlen client.
Thanks for your post I hope many will read ad head.
Sincerely,
Ann Bonvallet
Hi heather my jennifer owen I am 23 I have dyslexia and Irlen syndrome I have a little tip for you using your overlay over your pattern it will make a different because i do crosstitich and I have a blog too please check out my blog dont called stupid and i have finsh my christmas card in a month and half by using my overlays over my pattern
I have been using overlays on my patterns and it does make a big difference. Thanks for the tip.
I am glad you used my tip if your overlay keep moving used blue tasked or white taked to keep it in place. a other tip for you.
I found out last year that I suffered from visual stress, however school have not been very helpful, they just act as if my coloured lenses or overlays are a cure, which they are not. They still treat me as if I’m stupid which I don’t believe I am as I do well when answering oral question rather than written.
I’ve been looking into getting tested for dyslexia so that maybe they will be a little more cooperative because maybe they will understand that more than visual stress.
I hope you will get this figured out with your school soon. It is not at all fun to be considered stupid, as I well know.
I am glad that you have posted your blog. I am a 46-year old women who recently found out I had irlen syndrome. I never knew that light sensitivity was a problem until I have been placed with my irlen filters just 3 months ago. I now see depth perception and my life has changed dramatically. Much misunderstanding has been placed upon me over the years and wish to create more awareness on this affliction. Please visit my blog at livinwithirlen.com
Cindy, glad you got diagnosed. I hope you continue to see the changes in the coming months as I did.
This colour background is perfect for me, as you say far too many white blogs and websites out there! I was diagnosed as a teen with SSS but there was little or no information out there but I haven’t been able to get tints for many years so I learnt a lot from what you described here, I assume that I must be ‘thick’ or take my adaptations and compensations for granted. Thanks for sharing.
PS. Your tatting is beautiful! ๐
Seeing what I’ve been trying to explain to others in someone else’s words is amazing. Your background color makes it even nicer (It’s a nice teal when mixed with my purple lenses :D). The word islands surrounded by flowing seas of chopped up words and seas of white, the burned after images of white on black text furthering my “migraines”, the strange depth perception quirks… Being unable to express my mind to the actual world and the frustration this dissonance created within me. God, it was terrible.
Until I turned around 21, I just assumed this was normal and there was simply something wrong with me. Even the eye doctors and neurologists thought I was crazy and needed to be put on anti-anxiety pharmaceuticals. Really makes you lose faith in the institutions, right? I remember sitting in an accounting class 3 years ago asking the guy next to me why that unbearable flicking fluorescent light wasn’t killing him and just getting a funny look; then beating my head up further while trying to read the abominable text later… I think I found the condition on the internet that day while searching for information on the visual snow that I thought I had / might have in addition to SSS. Oh, and Dyslexia runs in my family. Big surprise. The lack of awareness and help I received until I sought out help is amazingly sad. I’m can really empathize with you there.
Anyway, thanks for the read. I just got my first actual lenses recently and this gave me some hope. Living in confusion, helplessness, and self pity is a terrible thing. I’d be interested to hear if things continued to work out for you if you still check up on this.
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The color is just fine with me. Thank you for hanging in there long enough to find some relief from the symptoms of your Scotopic Sensitivity Syndrome. I am really anxious to get going with the tatting instructions now. Thanks again. Doreen
Hello! I know you posted this a few years ago but I just wanted to say I loved reading your story!
When I was in 8th grade I discovered I had Scotopic Sensitivity Syndrome. When I first found out I didn’t really care and I really didn’t want anybody to know. (I mean I was in 8th grade just trying to not be a weirdo!) haha ๐ Anyways now I am in College and I am so thankful for my diagnosis although I still struggle with reading a lot it is at least nice to know what is going on and how I can keep on improving! So thank you for your story it is always helpful to hear about someone else’s story! My colored over lay is blue-grey btw and I love the fact that you made your blog background the color that helps you best, white background are hard to read!
Thanks again!
~Steph
Thank you so much for your story Heather. My 9 year old son has had reading/writing difficulties ever since he started school (he is now in year 4). He is a bright, well behaved boy whom everyone adores, but can not understand whe he had made no progress in reading when his verbal communucation and comprehension levels are so high. My husband took him to be screened for dyslexia yesterday and was given the diagnosis of SSS. Amazingly on the drive home hubby had flashbacks to his own childhood, where similar problems had occured for him, but he had not realized that this was what our son was also experiencing until now. When I read that this is most likely a hereditary problem I felt like smacking him over the head for not realizing sooner. My son now has tinted overlays which we are playing with to discover which suits him best. We also did a test on our third son (we have 4 boys) and he told us that the blue overlay stopped the words from moving, which we didn’t realize they did for him, everthough he is having similar difficulties to his older brother. I cried while reading your story as so much of it sounds familiar, but am so glad that this has been diagnosed now rather than later! Happy tatting!
Nice to know I am not alone. Since this is not a physical deformity disability, people dismiss it. Got all your arms, legs, toes, fingers? You must be faking it or a moaner, people are thinking. Oh, the struggle I have been through at work with lighting issue. Management rebuffing my claims that the fluorescent lighting is affecting me. I had to go through a long drawn out stressful process, until relocation (not good anyway) in my department.
Infact, management have used the opportunity to demote me. There has been an individual from my team coming down to my work area switching on all the fluorescent lights throughout each day.
So this is the mentality of people (generally) for disabilities they can never understand.
I have no doubt that many people with Irlen Syndrome have either been bullied sometime in their life or harassed at work.
If you can, work from home! Otherwise life it utterly miserable if you have severe Irlen Syndrome.
Nice to know I am not alone. Since this is not a physical deformity disability, people dismiss it. Got all your arms, legs, toes, fingers? You must be faking it or a moaner, people are thinking. Oh, the struggle I have been through at work with lighting issue. Management rebuffing my claims that the fluorescent lighting is affecting me. I had to go through a long drawn out stressful process, until relocation (not good anyway) in my department.
Infact, management have used the opportunity to demote me. There has been an individual from my team coming down to my work area switching on all the fluorescent lights throughout each day.
So this is the mentality of people (generally) for disabilities they can never understand.
I have no doubt that many people with Irlen Syndrome have either been bullied sometime in their life or harassed at work.
If you can, work from home! Otherwise life is utterly miserable if you have severe Irlen Syndrome.
I am getting tested today. Yay!
Your story is nearly identical to mine as far as vision goes. I prefer to live in the dark. Like you, I memorized music because I could not read the sheet music. Distinguishing between notes when the bars were shimmering and moving around was simply too difficult for me. It was like looking at one of those spinning optical illusions. What blows my mind is that I just assumed that EVERYONE saw it that way. Apparently not.
Anyway, I just found out about Scotopic Syndrome last weeken and I can not wait to get a pair of lenses so when I read the words will stop dancing all over the page. Thank you for writing such a wonderful and detailed article about your experience with Irlen. It is time this becomes part of the public consciousness so that our children do not have to suffer as we did due to lack of knowledge.
-A
P.S.
Job is one of my favorite books. Blessings to you ๐
I’m so glad you are finally figuring out how to improve your life. Let me know how the testing goes.
Heather, today “blue” my mind. Seriously!
Without the lenses/overlays I am not a “slow” reader in that I do read slightly faster than I speak. However my speed is due to ‘chunking’ the material into about three or four words at a time, skipping what is irrelevant. However, this way comes at a price because I do miss details that are. It turns out, I was using A LOT of “coping” methods in order to make it as far as I have.
Once we narrowed down my lens combination to two options, I began reading aloud. It took a few sentences for my brain to adjust and once it did, it was like my subconscious booted me into the passenger’s seat and then PUNCHED IT. With NO EFFORT, all of a sudden my mind READ, UNDERSTOOD, and SAW EVERY WORD from where I was reading aloud and in a second was halfway down the page so fast my mouth could not keep up and I had to stop.
I can not explain it other than it was like a bursting dam and my mind went so fast it actually STARTLED me. My story may not be ‘typical’ BUT in a matter of a few seconds I TRIPLED my reading speed and comprehension.
Not only that, but my “chunking” ability went from 3/4 words to nearly an entire line of a page 8.5″ wide! Not just a kind of “it is in my periphery” sort of thing, but I could read the whole line without moving my eyes kind of thing.
My entire body relaxed, the “noise” in my head disappeared, and the words on the page — for the first time in my life —- just sat there, quiet and still.
My husband told me that my face became more expressive and relaxed. He said my entire body changed, even my voice! The Dr. said she wishes she had recorded the session it was so dramatic.
What I noticed was how I FELT. I had NO IDEA that reading did not take “work”. It was like my brain was on rails and I was just a passenger enjoying the scenery as it flew by the window — only I could see everything in detail, remember what it was, and … well… just WOW.
I have two overlays that make dark almost a cobalt blue when stacked. My indoor lenses are darker than my overlays – extremely dark blue.
For outside, my blue lenses did NOT work. In fact, I became dizzy and nauseous with them. I needed extremely dark grey – not quite black, but Roger and the Dr. said it looked like it was about 8pm to them. (We were standing in the bright sun at 1:00 in the afternoon).
Bottom line. I am EXTREMELY light sensitive and it turns out that my entire body had simply “shut down” in order to cope. I am always walking into things, hitting the door jams with my shoulder, stubbing my toes on the dresser – (I have TRIED to teach it not to just jump in front of me like that!).
(no joke) Once, I was walking down the street with my cousin and I walked straight into a lamp post. I just turned my head for a second and BAM! Stacy laughed so hard she fell down. I had a nice goose-egg for a day or two from the incident…
Anyway, I could list all of the other things that I experienced in just that testing session, but the real test will be when I get my glasses in 2.5 weeks. I really do not know how I am going to contain myself. I mean, I can not BELIEVE I have managed to function as well as I have for as long as I have (I am 41). I always knew I was sensitive (Aspie, that is me…), I just had no idea just how much my light sensitivity was affecting my entire body and mental processing abilities.
I will let you know how my glasses work for me once I get them and try them out for a bit.
-A
Awesome! I am so happy for you!
I am coming late to your tutorials and this part of your website. Like you, I have always had a couple vision issues that I never knew were “not normal.” While my issues are different than yours, I really appreciate your sharing your experiences – if nothing else, it lets folks know that some of the things they may be struggling with may not be “normal.”
One of my vision issues is that my eyes are very sensitive to light. I remember the old kids’ Weekly Reader used to be printed on light green paper because that was the color that was most restful. Personally, the thing I noticed first about your background color was how much my eyes relaxed. Even though I don’t have any of the other Irlen symptoms that you discussed, I may get an overlay anyway – when I changed the background color on the Irlen website to the light blue, my eyes just yelled “thank you!”
I hope you are continuing to do better. And thank you for these tutorials as well. I got tired of saying my great-grandmother was the last one in the family to know how to tat, and decided to change that. I may be a bit long in the tooth at this point, but you can teach this old dog new tricks!
Take care.
Hello, glad you found a way to cope. I am 24 and now back in college. Unfortunately, as I have returned the past year has been a ultra contrasted/eye-straining/headache/blur. Fortunately, I am fairly bright and I have coped in my own ways as well. However, taking into some of these considerations and ideas sound like an ideal and rational way to help cope with this issue.
I was wondering, is there any trend/correlation between Color deficiency/blindness (i.e. failing a color blind test)?? It has been remarked that I have “better” than perfect vision over the years of eye examinations, however due to this contrast issue I feel as if it is getting far worse. I almost can’t read something for example, with red text with a blue background.
I found out that I failed this color blind test (i.e. determine the number or letter in a correlation pattern of overlapping/collected circular dots of color), while being enlisted in the Navy, fortunately I ended up passing the “failant” examination, which would say more color vision is worthy enough? The examiner even remarked that in the decades of time he has given these examinations, he has never seen someone fail everything in the gen. color blind test and pass the failant test with “flying colors”(ha).
So, I thought that extremely strange. While going to classes and dealing with even this text box of contrasting black and white. I have found that symptoms of dizziness/disorientation/lightheadedness/foggy mind/problems with critical thinking/problems with reading/eye strain/headaches. I feel like my eyes are not “perceiving” correctly. Now, I feel as if this is spot on or at the very least, very similar to this issue. In fact, I feel as if the high contrast difference exemplifies all of these symptoms.
Furthermore, I find it extremely difficult to workout after classes, from the resulting symptoms and that my symptoms are relieved somewhat, while working out for 1-2 hours. I also noticed that I find it so much harder to read(almost impossible) after these workouts, even if I started to feel better from a prolonged session at the gym. I power lift, run, swim and train in kick boxing(examples of activities).
I feel like I am constantly rubbing my eyes as if my vision seems so very distorted and my eyes feel very “unusual”. Reading on your site actually does alleviate some of these issues as well with the teal background.
Also, is anyone here familiar with Vertical Heterophoria (Dr. Feinberg) or other vision related symptoms that may be able to shed some light here? Possible connection?
List of symptoms:
1)Sensitivity to light/glares
2)headaches primarily form eye straining
3)troubles reading and concentrating
4)troubles with critical thinking
5)text seems distorted(contrast, almost blurry but not in a sense like scratchy or wavy around the defined lines. This is kind of like the words are being swallowed by the background).
6)social symptoms resulting from these visual issues, finding it hard to communicate your point or how you feel or what you are thinking to someone else.
7)Fatigue mental(kind of feels physical, because of the mental exhaustion)
8)eye lid twitching occasionally
and so on…
I have had Neurological evaluations: Checked out clear
I have had Psychological evaluations: Checked out clear(no signs of brain damage).
I have also had brain scans: Checked out clear for tumors/obstructions
Overall, I am very healthy, I have an “athletic level” blood pressure, I eat relatively heatlhy, and I exercise regularly.
I have found this to be so exhausting, that it feels short of truly “living”, it’s like almost having an altered mental state in a sense or living with half a consciousness from feeling so out of it.
Note: I am continuing follow ups with Doctors to get to the bottom of this, it just becomes problematic while I am constantly in school and out of town from my PCP and other specialty doctors that are local to my families home.
I am also attempting to see an Ophthalmologist asap as I have this strong feeling that there is some issue between my perceptive abilities and cognitive abilities.
Also, I greatly appreciate you taking the time to tell your story. I truly wish you the best, while everyone may experience the perception of life slightly differently. Having an overall limit or bump in the road when it comes to this can be quite harmful. Again, thank you for everything and I find it quite inspiring that you fight this with such an overwhelming lovely attitude.
-Nick
Hi guys.
A bit long winded I apologise!!!
I’ve been trying to look into visual stress or as I mistakenly call it ” visual distress :/ ” and came across this site.
I have been suffering with vertigo for a whole year and constant fatigue and sickness for much longer….continuously in fact!
i went to my Drs, found no ear issue ect, so eventually I wondered if it was eye related “last hope”. Opticians said I have excellent eye sight but have an astigmatism, squint and light sensitivity and was prescribed slight lenses for this “boom vertigo near enough extinct”
I know I ‘ve never had any depth perception “people actually laugh at how shocked I am when we don’t arrive to the object I’ve seen, thinking it’s much closer then it actually was ect.
I can’t see in 3D to all my friends amazements “they are jumping at things flying towards them from the screen and I’m sat watching them like…wtf are you responding too?!! And wondering why I can see one lense blacked out of the glasses but the other fine, but if I close An eye the other lense becomes the dark one….that could be normal! ”
I also atmit I needed reading lessons in junior school and failed miserably at all school work so I gave up attending on most occasions..
I have been studying at college as I want more for myself but again Ive been struggling, so my tutor arranged a session with the learning dept who asked me loads of questions then got all these paper tests then coloured overlays out.. they are adiment I have this visual stress “irelenes syndrome” and dyslexia or other learning processing difficulties. They said they would need me to see an optimitrist and pay ยฃ80 to find out more as they aren’t “diagnoses.”
I’m just wondering if this is worth it at this point I’m now 33yrs old and I don’t know if college know what they are talking about I just can be thick at times…also having driving difficulties I’ve just failed my 5th practical attempt, they say I drive like a pro so don’t understand why I can’t pass, but I somehow can’t follow road markings/ signs at round abouts as I always make stupid mistakes when trying to find the upcoming lanes to follow when coming off the round abouts ;( if I weren’t so determined and stubborn I’d of given up long ago!
I understand that this was quite a few years ago now, and I hope your glasses have worked!
I never comment on articles and posts, but I am so overwhelmed by your experiences that I had to share. I was diagnosed with Irlen Syndrome about 1 year ago now. I was lucky enough to have vocational rehabilitation services pay for my glasses, and it has been life changing. The reason I felt compelled to reply, however, was because I’ve struggled with this syndrome my whole life and done every. single. one. of your coping methods as well. Thank you for sharing, and thank you for explaining this complex syndrome in such a comprehensive, and entirely accurate way. I’m so excited to share this article with my friends and family to give them a better understanding as to how much is “just me” or me “not trying hard enough” and how much are things widely experienced. Thank you.