Hi, My Name is Cindy and I AM MISUNDERSTOOD! My Diagnosis and Journey with Irlen Syndrome

I have been misunderstood all my life. All 45 years of them. It is amazing how I read one post on the internet has radically changed my life forever.

I repeat, I have been misunderstood. I have been blind in my left eye since birth. My right eye has been having problems since the beginning. I see spots like a television screen that moves around. I have had reading problems because of this. I also have depth perception problems as well. I have seen numerous docs over the years. I always thought my problems were because I was half blind meaning blind in my left eye. But the message was that I should be able to function like a normal sited person except for the fact I couldn’t see on one side. I had problems in school and getting tasks done. It is hard for me to focus especially when I need to read or complete assignments. I had many behavioral problems as well. I felt that I was the slow and basically not very smart. But I was smart……. I did eventually end up graduating from High School with the minimal passing grade point average. I tried playing competitive sports in high school but again was labeled as the slow and average athletic due to my depth perception problems. I was lead to believe I was slow and below average. It was then that I decided to never pursue competitive sports again but focus on individual sports such as cross country running. It was in college that my disability really started to surface. The long study hours and reading strained my eyes easily. I had problems finishing homework assignments and accuracy on both tests and homework. I always felt I understood major concepts of my courses but just couldn’t seem to be accurate on getting the results written down. I was an accounting major and accuracy was of extreme importance. I spent many hours trying in correcting errors knowing that I understood how to do the problems. I don’t know how I made it through those years but I did graduate with honors with an associate degree. It was during those years that even though I struggled so much I felt a boost in my self-esteem. Maybe I was smart after all. In my family, I was always the one that was not on track to go to college. I moved on to pursuing a degree at a university and my symptoms got worse. I began seeing a therapist because I was suffering from sleep and anxiety problems. I was put on paxil which really seemed to help with the anxiety. I was told that I was suffering from depression and that I would probably need paxil for the the rest of my life. I continued to take paxil for many years to help cope along with all sorts of sleeping pills. I wonder now how I made it through college in such a mental fog. I suffered from constant migraines that seemed to be triggered by many things. I started to have panic attacks. My degree was in exercise and sport science. The physical activity seemed to soothe my symptoms and did not require too much paperwork. I felt hope for the future. Entering the workforce was where I struggled the most. My field of exercise and sport science was a highly competitive field and it was hard to land jobs that would make ends meet. Somehow I seemed to take on random jobs that all were difficult for me. Such random jobs would include cashiering, customer service and weight loss counseling. In each and every job, I just seemed to have issues with accuracy in my work and seemed endlessly tired after a full-day of work. Although I seemed to continue working all those years, I never found a permanent job that worked well for me. My longest running job was at a weight loss company where I worked for six years. I was weight loss counselor who lost 70lbs on the program. I had gained a lot of weight due to inactivity for some years and depression. I felt empowered that I have finally found my career. So much heartache happened during those years. I could never move up in my job position due to my inability to do accurate paperwork which was unfortunately, a big part of my job. The paperwork was quite tedious since we had to balance long customer transactions by hand (no computer program to help balance). I wanted to move up in the company so badly that I worked long hours that left me tired and anxious. Yet I was a talented counselor who could not move up to management because of my ability to handle paperwork. My already sense of low self-esteem just couldn’t measure up. At one point in my time, I did seek help with my afflictions. Again I was labeled as a chronic depressive who could not handle all the pressures. I felt compelled to make a good living for my son. I was seen by a few eye specialists at the time. All of them came to the same conclusion. The symptoms I had could not be explained. My night vision was growing worse as well and I had to choose a lower job position so that I would not be required to drive long distances at night. I continued my job position despite my challenges. I became very depressed because I felt there were no answers. I did get help with vocational rehab during this time which left me feeling worse. Still no answers to my affliction. It seemed that each doctor had little explanation. At one point, I was seeing a retinol specialist who thought I might have a genetic eye disease that had no cure. I chose to not pursue the final testing (too much financially) and I just gave up. Even my vocational rehab counselor at the time stated that I should not have so many problems with paperwork. I did end up getting laid off one day from my long-term job. I was overweight and my self-esteem was at the lowest point. I remembered my director telling me that I was too much of a liability for the company despite the fact that I had been a strong counselor that consistently reached her quotas. I had loved working with all those clients over the years and was heartbroken. I vowed to never give so much to a company with little return. I also vowed to continue to find answers. My goal is not to gain pity for my experience but to gain understanding. Just recently, I found my answer over the internet while typing in my symptoms. I was trying to once again to find answers to my condition. I do have Irlen Syndrome, no doubts on this. My journey just took a significant turn when I read the symptoms which matched every single symptom I have been struggling with. It seems I have been treated for each various symptom, not knowing over years there was once specific cause. Not only do I have a visual impairment but a brain one as well. No wonder. Every experience I have had started to make sense. I have been looking at pieces of a puzzle that now have been placed together. I will never doubt myself again. I recently had a full eye exam with an ophthalmologist. He explained that my eyes were in good health. I did not want to waste my time explaining to him about various symptoms I have had in my right eye except the night blindness. His solution was that I had the wrong eye glass prescription and that would correct it. He did not want to address my concerns beyond that. I know this is not the case. I feel I am on the right track and he simply does not understand my affliction nor cared to assess more of my situation. He was just too busy. I look forward to the day that I will educate him more on my struggles in order to help others. I embrace my new discovery and no it does not bother me that I have this condition I am proud of who I am. I called a clinic who specializes in Irlen syndrome that day and my recovery is just beginning. I hope to help others who have been misunderstood. I didn’t explain many other problems I have had in my life such as relationships and addiction. That is another story. All I know is that one’s self esteem is so vital in life. Mine was not developed at any early age. That is the key folks. This story was written a mere 2 years ago. Since that period of time, I have been wearing the Irlen filters for almost the two years. I now understand why I am the way I am. The filters are a tool that has helped me in living a better quality of life. I do have a very severe form of Irlen and have learned to manage my life in a very different way. I know that bright lightening is always going to be a struggle for me. I have had to have a few adjustments to my filters as my brain continues to heal and restore. And inbetween those adjustments I receive a firm reminder of just how debilating Irlen symptoms can be and just how grateful I am in finding that piece of the puzzle that has plagued me over the years. My name is Cindy, and yes I have been severely misunderstood and have fallen through many cracks of the medical community. But there is hope and closure for my future. I now AM finally UNDERSTOOD!!

I have saved the my blog called "The Day I Started Wearing My Irlen Filters" and placed on this website which entails my personal journedy of how the filters have changed and impacted my life.