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I was struggling with a disorder I had never heard of!

During the spring I went to Chicago with my family. After a long day of shopping and walking around the city with my sister, I found myself getting super burnt out and exhausted. Like I needed to go home and nap as if we were out all day even though it had only been 3 hours. I didn't know whether it was anxiety, or not being on any grass to ground me, or being sensitive to energy or what. All I knew was that I was standing in nostrum rack waiting for my sister to try on shoes and I remember feeling extremely dizzy, fatigued, my eyes started burning and I couldn't think clearly. This happened often, but this was the first time I actually became super aware of it. I go back to the hotel and start googling. I google about my symptoms trying to find answers. Somehow I had landed myself on a page that talks about Irlen syndrome. I've never heard of it before but it piqued my interest.

What is Irlen Syndrome?

Irlen Syndrome (also referred to at times as Meares-Irlen Syndrome, Scotopic Sensitivity Syndrome, and Visual Stress) is a perceptual processing disorder. It is not an optical problem. It is a problem with the brain’s ability to process visual information. This problem tends to run in families and is not currently identified by other standardized educational or medical tests. Irlen Syndrome can affect many different areas, including:
  • Academic and work performance
  • Behavior
  • Attention
  • Ability to sit still
  • Concentration
This problem can manifest itself differently for each individual. This problem is not remediable and is often a lifetime barrier to learning and performance. If you suffer from any of the following, Irlen Syndrome might be your problem:
  • Print looks different
  • Environment looks different
  • Slow or inefficient reading
  • Poor comprehension
  • Eye strain
  • Fatigue
  • Headaches
  • Difficulty with math computation
  • Difficulty copying
  • Difficulty reading music
  • Poor sports performance
  • Poor depth-perception
  • Low motivation
  • Low self-esteem
Yup. Sounds like me. It sounded very familiar. I seemed to have many of the symptoms. But for some reason at the time though, I sort of forgot about it. 6 months later, I'm sitting at my local game store (I go every week to play the card game Magic the Gathering) and after losing game after game after game I get so frustrated I go out to my car and am trying not to cry. Now, I know everyone has bad games. I'm not a perfectionist that has to win every game or I get angry at myself. I do go to have fun. But I was just so incredibly frustrated and didn't know why.It seems I would always win my first game then after that just kept getting worse and worse. Making stupid mistakes. Not reading the whole card. You get an hour to play three games with your opponent. I felt bad for the poor sap that was my opponent because many times one game lasted a full hour. I just couldn't think clearly and the more I tried to rush myself to remember and make a decision, the more frazzled and anxious I got and sometimes  would just give the game to my opponent because I felt so bad I was taking so long. Many times I even end up forgetting what damn game my opponent and I are on. I have to ask them more times than I'd care to admit. Most people there are pretty nice to me, but I knew something was wrong. I wasn't a bad magic player. I had built decks and beaten people who had been playing 10x longer than me. I came first place at a competition once when I had only been playing for like 8 months. I knew I was smart and capable..Then why was I  struggling so bad? I got my IQ tested in high school. I'm not stupid. It came out above average actually. Then why was I making such careless and embarrassing mistakes? I had a feeling there was more to the story. I would always try to take my ADHD med as close to when I was going to play as possible, yet I was still having the same problem. I'd make sure to exercise that day and get enough sleep. I made sure to eat dinner and not go on an empty stomach. I thought maybe it was me eating junk food (which I'm sure contributes) so I stopped buying pop and chips. But I still was struggling. I was anxious and flighty and couldn't think. Sometimes people would ask me a question and I would have no idea what they were saying because I was trying so hard to think. I knew something else was going on, because it seemed to only happen at these game stores vs when I'd go to a friends house to play. As I'm sitting there struggling to figure out what my issue is, all of a sudden Irlen pops in my head. I was like hey that thing I complete forgot about. I should look into that again. I'm completely confident that it was a message. Someone was trying to help me out. I'm not sure why I didn't look into it more when I first found out about it..but now I was on a mission. No wonder wearing shades to work out indoors wasn't such a rare occurrence for me. I hated turning the lights on and always waited till the last possible second. I would start books and not finish them. Reading always made me SO sleepy. I thought that was normal! I wasn't diagnosed with dyslexia but reading was such a struggle to me. I thought I was just lazy. I love to learn but my bookshelf was filled with half read books that I always wanted to finished but just didn't know how. I don't remember the last time I sat down and finished a book, or even read for more than 20 minutes straight. My dad would come in the box or my room and be like "why are all the lights off?" I didn't know, I just didn't like them. I'm hypersensitive and get overwhelmed lately. I hate when I'm with a bunch of people and someone turns on music. TOO MUCH!! Or when someone puts on music or the tv when I'm trying to think. Or when two people talk to me at the same time. I can't handle it. Too much info, not enough brain. I lose my place when I read. I find myself going back over the same paragraph over and over not being able to remember it. It was exhausting. Studying is impossible. I don't do it. I can't focus on the computer either. I get so distracted it feels nearly impossible to sit down and do something. And much like many kids with ADHD, I blamed myself, asking myself why I didn't just try harder. So I'm taking the online test and checked almost every symptom yes. I was doing all the research I could. I was messaging people who had them and doing all this research. Getting testimonials. There was a burning desire that I didn't have before that I just felt like I needed them. I hustled through the processes in the quickest way I could. I was emailing everyone and getting prices. The first step is to get screened to see if you have it. I was lucky enough to find a women who used to work at a school and screen children. She only charged me $25 when the going price of this step was $150! And she was only a half hour away from me! It's crazy how you don't realize what problems you have because they are so normal to you. She holds up a white piece of paper and asks me what I see. Suddenly it looks like the whites blinding and popping out at me. The more I stared at it the more it started to look like it was morephing into one of those 3D magic eye pictures. The letters seemed to be shifting every so slightly. How have I never noticed this before? It was exhausting to look at. After I'm done with the testing. Completely exhausted and blown away at what I was seeing, she informs me I'm "severe". Yup, felt like it. Next you go get an eye exam to make sure it's not a visual problem. Thankfully America's Best had a special where you get an eye exam and two pairs of glasses and lenses for $60! That's a great deal. The best part was they told me it'd take 7-10 business days but only took about 5! I rushed and picked  them up as fast as I could then made an appointment which is the last step to find the right color. This process, which all together costed about $500, was more difficult than I thought. She holds up different colored lenses and asks if it's easier or not. I was having trouble telling because it was so slight. Sometimes it felt like it'd help with one problem (like the shifting letters) but another problem (like the spaces between the letters popping out) would make itself more prevalent. But something told me not to give up hope. I shouldn't expect a quick fix, it's a process. She told me that some people who have it minorly are fine with just one color lenses. She said others who have it super severe will have to be a longer process of figuring out the right shade since the problems been so bad for so long. I had been messaging this girl who's as severe as me and shes been super helpful. She goes to the same lady I do. She said her problem is as severe as mine, so that comforting to know and have someone to talk to. The process felt super intensive so we had to stop because my eyes and brain were getting tired. Thankfully we found a couple shades that seemed to take off a layer of the onion & help my eyes, but again because my case is so severe it's going to take a couple more tweaking appointments to really find the perfect shade for me. Over the weekend, I went to the holistic psychic fair at EMU. Usually I stay all day but get very tired and have to take several breaks to go sit in my car to rest. I thought it was just the energy, never knew it was the lighting! All day Saturday I wore sunglasses inside (felt awkward) but I didn't get burnt out like I usually do! Yay! I rushed the glasses out and rushed them back and checked the mail every day. They came today only about 5 days later! I'm so excited. They're as dark as sunglasses so it might be awkward wearing them indoors but so far I've been able to write this whole blog post for almost two hours without stopping! Progress right there! I feel like more people have this disorder than they think. It's still newly discovered so I hope to maybe get the word out there to help more people who  have been struggling like me but don't know it. I'm supposed to wear these, they're going to start helping my eyes then I am to go back in December to test for different shades again. So this story is to be continued! For more information on Irlen syndrome, follow this link. If you think you may have it and want to take a test click here. To find screeners in your area click here. And always feel free to ask me (Regan) if you have any questions!

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