7 Things I Wished You Knew About My Dyslexia

In my last post, I started to share My Journey to Becoming More Authentically Me where I let the world know I had dyslexia and that I had been putting so much energy into hiding who I cognitively am (and also who I am emotionally and physically). I am on the long and challenging journey to becoming more honest with myself and the people in my life – hoping that through this honesty and vulnerability, deeper connections can take place.

Additionally, ever since I was diagnosed with a learning disability, the shame has been debilitating and if by being honest about my disability I can shed light and deminish even a little of its power it has had over me for 30+ years, I am willing to take that risk.

“If we can share our story with someone who responds with empathy and understanding, shame can’t survive.”

Brené Brown

I have dyslexia, which is something I have not admitted to many people. One of the reasons for the secrecy is shame but the other main reason, is the lack of understanding of the learning disability and the stereotypes associated with it.

So what does having dyslexia really mean? As is often the case with disability, there are many misconceptions and generalizations floating around. It’s only through hearing from the lived experiences of people with dyslexia that you can begin to understand what it’s like, how it varies between people, and how you can support those who deal with it.

This is why I wanted to share the 7 Things I Wished You Knew About My Dyslexia…

#1

Dyslexia is More than Switching Letters and Numbers Around

It is true that dyslexia can cause the reversal of letters, numbers, or words but this is only a side effect and small part of the disability. Dyslexia is a phonological processing disorder which is described below with the two best definitions I have found:

“Dyslexia is a language-based learning difference. It affects the organization in the brain that controls the ability to process the way language is heard, spoken, read, or spelled.”

dyslexiaresource.org

“Dyslexia is a learning disorder that involves difficulty reading due to problems identifying speech sounds and learning how they relate to letters and words (decoding). Also called reading disability, dyslexia affects areas of the brain that process language.”

mayoclinic.org

In essence, I see things, hear things and say things differently, due to the way my brain processes information.

Perception wise, I found dyslexia to be similar to Tourette’s Syndrome. For example, what do you think of when you hear Tourette’s Syndrome? Do you think of the involuntary and repetitive yelling of obscene language (which is called coprolalia)? Most people do (similar to the way people think of dyslexia as switching numbers and letters around). Just a note on Tourette’s Syndrome, in reality only 10-15% of people have coprolalia. A majority of the time, Tourette’s Syndrome manifests in small muscle or vocal ticks.

#2

Dyslexia Means Something Different to Everyone

Growing up, I did not know I had dyslexia as it was considered a part of a Learning Disability, so my official diagnosis just said “Learning Disability” – which is a broad category and something that I rarely shared with anyone. Hearing as a 8 year old that I had a disability was something that brought me great shame and made me feel different (and stupid – given my brother’s were both in the Talented and Gifted Programs). I was obsessed with fitting in and not being different, so I mostly kept my disability to myself.

As a young adult, I learned the term dyslexia (and learned that it was part of my learning disability). It was talked about in movies, after school specials, and as social media was emerging; I felt the term was not as shameful as “Learning Disability.” When one of my bosses told me that he had dyslexia, I entertained the thought of telling some colleagues and friends…something I had never done before.

As I started to tell people that I had dyslexia, I was surprised that more times than not I heard, “Me too!” But I soon learned that people either self-diagnosed themselves because they sometimes confuse left and right or someone might have a mild case. I realized that the word is elusive as it means something different to everyone (and there is a wide scale of severity).

Saying “I have dyslexia” did not seem to bring the understanding or acceptance I thought it would … another reason I wanted to share more about what I wished you knew about MY dyslexia and what others too might experience.

#3

Trying Harder Won’t Help Me

Growing up, the people who knew about my dyslexia would often tell me that I just needed to read more or try harder. It wasn’t until much later in life that I realized dyslexia does not have a cure and that you cannot just “try harder”.

There was such a focus on “fixing me” that it left me feeling defeated, feelings that would plague my confidence for years to come, and still do today. I wish there had been more of a focus on fostering my passions and building up my strengths. Instead of putting water on the fire, put it on the seed.

It was not until I was a junior in high school that I was encouraged to focus on something I was already good at. I was lucky enough to have a teacher who saw how excited I was to learn and play around with the new creative programs we had on one computer in the journalism lab. He believed in me and encouraged me to focus on these interests.

When he asked me to be the yearbook editor my senior year, I turned it down at first, saying I could not be the editor of a yearbook when my reading and writing were at a 3rd grade level. He encouraged me anyway and said, “Focus on what you are interested in, become better at that, leave it to me to find you support in the ‘words’ department.”

I ended up accepting the nomination and threw myself into learning Adobe Pagemaker, the new program we got to help move us from rubber cementing pictures and text down on spreads to designing our first ever digital pages. As I learned and taught others Pagemaker, I was proud to have many pages in my senior yearbook that were created digitally – for the first time ever!

Additionally, I learned how to digitally edit video and ended up spending hundreds of hours creating a video with a classmate that honored a coach we lost to cancer our senior year. This video would go on to win a national award and be played at my high school graduation; giving me confidence and pride in something for the first time in my life.

Because of the support of this teacher, I would end up majoring in Communication Arts, with a focus on graphic design and video production. Going on to start my own video production and graphic design company and even having a role as a creative director for a local magazine and later in my career being the Director of Marketing for multiple companies.

#4

I Do Not Like Being Corrected

There’s a situation I have found myself in throughout my life, that always stings. I am telling a story, I am excited, I am building it up, and right when I get to the best part, I am cut off… “Rachel, you said the wrong word!” Immediately I am embarrassed and defeated, no longer even wanting to tell the story.

After this happened for years, I finally found the strength and confidence to say something. When it happened, I spoke up and said, “I do not like it when you correct me, you know what I mean.” The response was, “I just don’t want you to embarrass yourself and do the same thing with your friends or coworkers.” I would like to think that my friends and colleagues would not think any less of me if I said the wrong word…but maybe I was wrong; furthering my fear to share with friends and coworkers that I had a disability.

For me, it make seem small but being corrected, when people know what I mean, leaves me feeling defeated and embarrassed. Even if it’s coming from a place of love, you wouldn’t tell someone with Tourette Syndrome to stop ticking or someone with a stutter to “just spit it out”, so please, if you know what I mean, do not correct me.

#5

Pronouncing Words Louder, Slower, or Multiple Times Will Not Help Me

You wouldn’t (or shouldn’t) speak louder to someone who is deaf, if they did not hear you the first time; the same is true for me, when someone is trying to correct me or trying to teach me something.

Dyslexia is a phonological processing disorder, that means when you say something, I do not hear the same thing and/or I cannot hear and process that into words or even hear the differences in what you are saying and what I am saying, i.e. flack vs slack. This is also the reason I say words incorrectly.

This is particularly true with new and complex words and especially true in a different language. I have come to the conclusion, after many (6 to be exact) years of formal education and trying, and especially after learning more about my dyslexia, that I sadly do not have the cognitive ability to learn Spanish.

Something that is embarrassing and hard to admit (and probably what I hate most about my disability) is that it makes it hard to understand anyone with an accent. Not only does this make it harder to connect with more people but it goes against my core value of being inclusive, as sometimes I hold back because I am afraid I will offend someone if I cannot understand what they are saying…I know it is ME and because of my phonological processing disorder, but I am afraid they will feel hurt that they are not speaking clearly enough.

#6

Reading Out Loud Terrifies Me

Last year, I was participating in a social work event where, unknown to me prior, we had to read a passage out-loud. When this was announced to the group, I started to get hot, my face turned red and my heart started racing. I franticly started to read over what I would be reading out-loud but when someone’s body is in the “fight or flight” response, which mine was in, brain function is limited (because your body is saving all your energy to either flight (RUN AWAY) or stay and FIGHT).

When it was my turn, I read through my passage as fast as I could, unable to read some words, skipping over them or mispronouncing them. When I was done, I was covered in sweat, defeated, on the verge of tears, and had absolutely no idea what I had just read.

A couple months later when I was learning more about anxiety and trauma, I would learn that reading out-loud is something that triggers me, as it takes me back to one of my biggest fears from childhood – being called on to read in front of my peers.

There are a couple reasons why reading out-loud is not only hard for me but also why I am triggered by the experience:

I am unable to sound out words: On top of having dyslexia and all the challenges that I have mentioned, I was not taught phonics (which is being taught the relationship between the sounds of the spoken language, and the letters or groups of letters or syllables of the written language) instead I was taught Whole Language – basically leaving kids to learn how to read organically (like speech development) instead of teaching them the sounds and giving them a foundational approach.

Because of this, when I am reading something for the first time without prepping, there is no support for me in that moment when I come to a word I do not know. I panic and have no resources to figure that word out, there is no escape but to skip the word or say it incorrectly (or ask for help…yikes!)

If I had time to prep, I would use the word to speech function or Google the word to hear the pronunciation, over and over, which helps me understand what the word is- but given it is hard to process or hear the word and then say it – it does not help me when I am reading out-loud and especially cannot help when I am put “on the spot” to read something I was not able to prep at all for.

When I read, my brain is working on overtime; I am trying to process the words, once they are processed, which is hard enough for me, I need to then find the meaning of all the words and understand the point (reading comprehension). This process (reading and comprehension) is already painstakingly tedious and takes a substantial amount of energy and concentration. Now imagine layering on the Fight-or-Flight response that happens when I am put on the spot to read, given that is a fear or phobia of mine; I am now adding limited brain functionality to this process given my body is reserving all my “energy” to fight or flight. For additional context from Very Well Mind: What Happens During the Fight-or-Flight Response.

The reason I have the surge of adrenaline is due to the fear of being different or having my peers find out about my disability. This has been an ongoing fear since I was diagnosed. I remember having to lie to my friends and class mates when they asked why I was pulled out of class for tests or why I was no longer in their reading groups. Looking back, I wished I did not let my dyslexia have so much power over me and cause me so much shame/isolation. This is one of the reasons for posting, in the future if I am asked to read something out-loud, I hope I will have the strength and confidence to say “no thank you” or “can you read this for me – I am dyslexic and reading out-loud is something that is hard for me”

To teachers and everyone else out there who is ever in a situation where you are asking people to read out-loud – I hope this gives you some understanding as to how triggering and difficult (and useless) reading out-loud can be for some people. If it must be read out-loud I implore you to make it voluntary or at the least, prepare people and give them notice on what they will be reading out-loud and when.

#7

It’s the Reason I am Not Saying Your Name

As I mentioned, one of my core values is inclusiveness, wanting people who I am interacting with to feel accepted and included. My biggest fear is offending someone or making them feel unimportant. I believe one of the worst things I could do is call someone by the wrong name. There have been a couple times in my life that I have done this and it is mortifying; I never want someone to think that I do not care about them.

Given this, and coupled with my phonological processing disorder and not being able to hear the difference in some words, I am terrified that I will say the wrong name, thinking I am saying your name correctly…so I typically just do not say your name. Which is incredibly frustrating as I know saying someone’s name actually makes them feel accepted, appreciated and seen/heard! Dyslexia SUCKS!

This is definitely the case for complex or unfamiliar names (sadly this is one of the reasons I decided not to be a teacher, I was worried I would not be able to pronounce the names of the students in my classes…or I would spell words wrong on the board) but actually it is more prevalent in names that sound somewhat similar. Some of the ones I am most challenged by are Jan/Jane • Judy/Jody • Brandon/Brendan. I actually need to say “rain” in my head before I say “Jane” to ensure I say Jane instead of Jan.

This is especially hard with new names, as back to my earlier point, if I meet someone and they say their name and it is not familiar, there is no way for me to pronounce it back to them if I am hearing it for the first time, so I just do not say it again, fearing I will say it wrong or completely different; leaving them feeling unimportant.

When I worked in sales, I would look at the list of people I would be meeting the next day and put their names into YouTube and play the pronunciation on repeat. I would then write down what it sounded like to me (often using rhyming) or create pictures to help me remember. If I had a long list of new names, this sometimes took hours. I wanted to ensure when they said their name, that I had practiced it enough to be able to repeat it back to them…but under stress, the phonological processing disorder is amplified, so typically, just to be safe, I will choose not to say the name; which I feel is better than the alternative – saying the name incorrectly – understanding how that could make them feel unimportant.

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If you have made it this far, thank you for reading 🙂 Again, these are all things that are personal to me and might not resonate with someone else even if they too have dyslexia. I am hoping that by sharing these challenges and personal fears, it will diminish the shame I experience from dyslexia and empower me to be more open about the challenges I face on a daily basis.

Something important to note, and it might surprise you, I recently have become somewhat proud of the fact that I have a learning disability. I feel it has taught me to be resourceful as many times in my life I had to discover ways to get the support I needed given I had hid my dyslexia from so many of my teachers and colleagues.

In my next post, I will touch on the resources that have helped me with my dyslexia through the years.