Disenfranchised Grief Caused by Undiagnosed Dyslexia

“In July, I fell bruising my knees and shoulders and whiplashing my neck. Today, I am recovering.” What I have found is that at age 75 I am not recovering like I did at even age 60.

I am grateful that I did not break anything besides my ego. I bruised my knees and shoulders and whiplashed my neck. The fall triggered my fibromyalgia so I decided that it was time to go to a rheumatologist. She diagnosed me with fibromyalgia and severe arthritis. After discussing my options for a recovery plan, together we decided that I would begin with aqua physical therapy. I started going twice a week the Tuesday after Labor Day. 

My Experience with Dyslexia

While doing my individual exercises in the pool I began to have trouble with my dyslexia. When people were talking around me, I would loose count of my exercise task. I believe I did one 20-count rep 40-50 times. I would loose my count either by skipping numbers or forgetting what rep I was doing. Music was playing, and I began to keep time to the music rather than count the reps. Finally, I asked the Physical Therapist if there was a way that I could time the exercise rather than count the reps I did it. We decided it would take a minute to do 20 reps and changed to watching the clock rather than counting the number of times I did the exercise. It worked, and my dilemma was solved.

You might ask what having trouble reading has to do with counting. Dyslexia is more than letter reversal or trouble reading. Those are only two of the 37 characteristics of dyslexia.

What is dyslexia?

Here are three definitions:

1. The word dyslexia is a combination of two words: Dys-poor or inadequate learning or mastery of and lexia –verbal language. So, dyslexia is an inadequate learning of or mastery of verbal language.

2. Some dyslexic individuals are picture thinkers who experience perceptual disorientation in the senses of time, vision, hearing, and balance and coordination.

3. Dyslexia is an unexpected difficulty in learning to read. Dyslexia takes away an individual’s ability to read quickly and automatically and to retrieve spoken words easily. It does not dampen one’s creativity or ingenuity. People with dyslexia problems in reading include difficulty reading numbers, putting words in places that they are not there, and leaving words out that are there.

Most dyslexics have high IQs. So we invent ways to compensate early in life. That is why many of use are misdiagnosed or not noticed at all. We are the children and adults that slip through the cracks. 

The Affect of Being Undiagnosed

I was accused of being stubborn, lazy, and having low motivation. This became an unrecognized loss in my life. I was full of shame. I quit college because I did not have the confidence to continue. I returned in my 30s still undiagnosed and struggled to earn a master’s degree 13 years later. I struggled to pass the written MFT Licensing Exam 15 years later. I would not be given extra time. I had never been diagnosed while in school and had earned a master’s degree. What they didn’t know is that I taught myself how to learn with my learning differences and struggled my way through the programs without the support from the schools. The orals in comparison were a snap. I decided not to go on for a PhD because of my dyslexia I did not have the confidence to write a dissertation.

When I look at the shame I acquired throughout my life because of this undiagnosed learning disability, I am sad. I recognize two self-destructive ways that interfere with how I do things and what I do. One is perfectionism. I refuse to accept any standard for myself that is not free from any flaw or deficit in condition or quality. Things must be exactly right, absolute, or complete. I still struggle with this. At least now I no longer expect it will be this way the first time. I am still learning when good enough is good enough. This leads to the second self-destructive behavior, procrastination. I delay taking action or postpone things due to the fear of not being perfect. I sometimes, no, most of the time, experience shame when my writing come back with red editing. The more I blog the less this affects me. My ego is getting stronger and I am enjoying the process. My eldest Granddaughter (24) is my editor. I am enjoying working with her. We are a team. She explains to me what I did as she understands. Both her mother and her uncle are dyslexics. We were all diagnosed at the same time. 

Due to finally being diagnosed, we are all able to grieve our losses in education because we didn’t know we had learning differences. We can put the blame on an educational system that missed our condition that let us slip through the system. It is still a loss, only it was not our responsibility. We can now celebrate “thinking out of the box”. We can let it go and let it be what is. We can learn how we can help ourselves. 

I will finish with a comment my son made 30+ years ago when his dyslexia was finally diagnosed: 

“I was trying so hard! I knew I wasn’t stupid, I just couldn’t get the words I saw or heard from my brain, through my mouth or written onto a piece of paper. Now I know why!”

Now we can morn the misdiagnosis and celebrate the creative individuals that we are.