The Grief Nobody Talks About After a Dyslexia Diagnosis

In this deeply personal episode of Unmasking Dyslexia, Carleen explores the grief process that can follow a late dyslexia diagnosis and why so many dyslexic adults experience emotional upheaval after finally receiving answers.

While society is beginning to highlight the strengths and gifts associated with dyslexia, this episode creates space for the other side of the journey — the grief, loss, confusion, and identity shifts that can surface after diagnosis.

Carleen discusses:

•  Why late diagnosis can feel emotionally overwhelming 
•  The grief of missed support and misunderstood childhood experiences 
•  How dyslexics often internalize negative labels 
•  Why hope can temporarily disappear after diagnosis 
•  The connection between wellbeing and dyslexic challenges 
•  The importance of self-acceptance, nervous system regulation, and healing 
•  How positive psychology, resilience, and post-traumatic growth can help rebuild identity 

This episode also introduces Snyder’s Hope Theory and offers a guided visualization exercise to help listeners reconnect compassionately with their younger selves.

If you’ve recently been diagnosed with dyslexia or are struggling to redefine who you are after diagnosis, this conversation reminds you that grief is normal, healing is possible, and your story is still unfolding.

Transcript

SPEAKER_00 0:01

Welcome to Unmasking Dyslexia. I'm Carlene, your host, and with each episode, we challenge the story that surrounds dyslexia. We will explore the strengths, the struggles, and the science behind the dyslexic experience so that you can better understand yourself or someone you love. Grief after diagnosis, is it a real thing? Well, in my last episode, we actually touched on this a little bit about how after a late diagnosis, you have to reframe and re-identify who you are as an individual. And in this episode, we're going to dive a little bit more into that grief because I think this space needs more airtime. I think we need to talk about the grieving process of the dyslexic identity, of the dyslexic diagnosis, or simply just being dyslexic within society. There's a huge reframe of all the abilities and strengths and advantages that come with being dyslexic. And yes, research is showing that we have amazing abilities that come with our brain that we need to showcase to the world around us. However, when you are that individual, sometimes it's really hard to attain or attach yourself to those positives of being dyslexic when you still are grieving the loss of being dyslexic. And when we look at the grief process of dyslexics, if you're late diagnosed, you end up grieving all the missed supports that you could have had in place that would have made your life easier. And with those supports and that earlier diagnosis, what could come, could have come about was that you just even understood yourself better, that you had a better understanding that there's nothing wrong with you. You're simply dyslexic. It is that misdiagnosis or that misunderstanding of your childhood. I grew up my whole childhood thinking I was different. I knew I was different. I knew I didn't think like everyone around me. But what I struggled with was getting people to understand my point of view because it didn't align with theirs. Remember, as society shows, about 5% to uh 10%, depending on what stats you look at, are dyslexic. That means that it's one in 20 when you're with 20 other people, it's only you that thinks like you. And that can be quite a challenge in social interactions. You know, what's commonly known and researched is the anger of dyslexics, that anger is supposed to be higher in us. And and I get challenged with this one. Um, I'm generally not an angry person. However, when I look at the research, I can I can accept what they're saying. But here's the thing: let's first break down what anger even is. If we have healthy, righteous anger, it's fine. And what comes with that emotion is that a boundary has been crossed. So if we look at it, that when you are angry, something that you value has been dismissed, or a boundary has been crossed, you start to look at the anger that could come along with dyslexics as more acceptable or understanding. It's not a shaming thing. In so many ways, again, one in 20. If you have 19 people belittling or not paying attention to anything that you have to say, thinking that you don't have merit because you're coming from it from a totally different perspective. I kind of think a little bit of upheaval, a little bit of uh righteous anger kind of makes sense. I don't think it's a shameful thing at all. I think we have to, within science, reframe what we mean by anger and the contexts we are bringing about. Because unfortunately, society is just taking the statement and they're applying it to everything, and that is incorrect. I think the biggest thing for me with the grief process after diagnosis is almost the loss of hope. This is something that I personally experienced, and it was quite significant for me. So, first, let's break down what hope means in psychology. Hope is not a wish. A lot of people use these interchangeably. They think that I hope for a rainy day, I hope that life is happy, I hope this, but those are all wishes. We're using the word incorrectly. So if we take a look at hope as a psychological construct, hope is a cognitive belief that your future will be better and you will have the ability to make it happen. So it is taking that future focused that something good is gonna have, but you are able to help contribute to ensure it to happen. Hope is an amazing, amazing cognitive belief. And when we lose hope, we it can take us to very, very dark places. And what I found after my diagnosis is I lost a bit of hope. And it was huge. And it took me a long time to rebuild it. Thankfully, I was doing my master's in applied positive psychology. So that really helped me be able to attain and attach to higher vibration or more optimistic outlooks on who I was and my future. But the reason why I lost hope was my whole life, I thought if I just work harder, if I just apply myself, if I just study more, if I just show up better, if I pay attention more in that conversation, I'm gonna remember what they said. If I pay more attention, I'll be able to do whatever it is, pull up facts, say the words better. If I just work harder, which is a really common thought process for us dyslexics. And I lost hope because what I found out was that I was dyslexic and it had nothing to do with my workability, my work ethic. I had crazy work ethic. But the thing is, is that my brain has set up challenges that I'm not necessarily going to be able to overcome. They will always be there. However, through my studies, what I really discovered is that when our well-being is higher, our dyslexic challenges can showcase lower, at least they did for myself. And this is something that I would love research to take a look at. If we have higher levels of well-being, and well-being is not happiness, we'll talk about that in future episodes. But if our well-being is higher, our outlook on life is higher, our stress levels are lower, how do our dyslexics challenges surface? And for myself, the more I increased calm, peace, and happiness, and a big one, acceptance, all of a sudden my challenges weren't as noticeable. The other thing that I think is important to notice and recognize is that after the diagnosis, I thought I had almost a placebo effect and that I had more dyslexic challenges surfacing all the time. And I was like, wow, the brain is amazing because now I have this diagnosis. I'm actually showcasing more dyslexic challenges. So I asked those around me if it was more frequent. And they said, no, you were always like that. So again, we have a grief is that I never realized how I showed up until I became aware of what the challenges were. I never noticed how frequent my dyslexic traits showcased within my conversations, within how I interacted with people. But they noticed, but they didn't know it was dyslexia. There was a different label that they gave me. And so there's this grief process of being labeled wrong, a grief process that now you actually recognize how it showcases and shows up in your life. And a grief process, even that you're grieving it, because there's nothing wrong with you. And it comes through self-acceptance. But that doesn't mean that you go right to self-acceptance. You have to grieve first. So many of us want to showcase just like they do in the movies, somebody has a traumatic experience, and then the next cutscene, they're out partying with their friends. But that's not how grief works. Grief takes time. You have to recognize it, you have to honor it, you have to hold space for it, for it to transform into resilience, for it to transform into post-traumatic growth. There are beautiful ways to do this through coaching models, but you can also do it through therapy. So just to leave you with a little bit more of a hope process and a way of dealing if you're going through grief of diagnosis, is I want you to do an exercise with me. And I invite you to picture your younger self. Picture your younger self in your mind's eye and just place your hand on your chest. And I want you to picture that younger self and just ask what do they need? What do they need from you now? Is it self-acceptance? Is it protection? Is it hope? Is it acceptance? Is it love? Is it unconditional love? And as you take a deep breath in, as you blow out, send whatever it is your younger self is asking to yourself. Start working with your younger self that way through visualization. That's amazing the transformation that can happen inside of you. So when we look at hope, we have to realize that the hope theory is that our goals, hope equals our goals, our pathways, and our agency. What that means is that we have a target of where we want to go. We have the way power. We know the roots and routines of how to get there and multiple ways in case we face challenges. That's our way power, our ability to work around obstacles to achieve that target goal. And we have agency, which is our willpower. We have the energy and determination and self-belief. And when we are able to combine our way power, our willpower and have a targeted goal, we have amazing hope. It is possible for the dyslexic. It is more than possible. You definitely can have hope within dyslexia, and that will help move you from the state of grief into something so much more powerful through resilience and post-traumatic growth. If this episode resonated with you, know that you are not alone and make sure to share it with someone else who might need it. Through my work at All That I Am, I offer courses and coaching to help you reconnect with your strengths, your meaning, and your sense of mattering. There are links to what I offer in the show notes. And don't forget to follow the podcast so you don't miss what's coming next.