Ectodermal dysplasia affects my life in different ways. For many years, I only thought about the ways that having x-linked hypohidrotic ectodermal dysplasia (XLHED) has caused my teeth to develop abnormally or my body to dehydrate easily. However, more recently I’ve also discovered that having this genetic condition has impacted me emotionally as well.
As I sat through uncomfortable dentist appointments throughout my teenage years or watched myself trying to fix my hair in the mirror before school in the morning, I was unintentionally ignoring my own emotions. As my dentist delivered disappointing news, I would try and shove any feelings of sadness deep down so that I could appear immovable, “brave”, and “strong”.
As I sat in junior year English class and felt one of my dental caps crumble on my front tooth, I did my best to mentally numb the rising panic I felt. Time and time again, I put all of my emotional effort into ignoring everything that I possibly could. I would scold myself for feeling anything and strive to be what I thought of then as “strong” by not letting anything make me cry.
Understanding My Emotions
Just about a year ago now, I sat in my therapist’s yellow office and watched as she googled an emotion wheel. She read through the different color coded sections and asked if I felt “disappointed” or “frustrated” or “relieved” about a particular topic we had been discussing and I didn’t know. I knew I felt awful.
I knew my body was tired, but I couldn’t sleep. I knew my mind was always running but I could never seem to get anywhere. I was in a constant state of frustration and irritability, but I couldn’t see it at the time.
The process of understanding my body’s feelings and building my emotional vocabulary took months to practice, but a feeling of relief was almost immediate. Then and there, in my therapist’s office I knew that we had hit the metaphorical emotional jackpot.
Years of intentional ignorance of my feelings had finally caught up with me. My body was full of bottled up frustration and disappointment and anger that my mind had worked so hard to ignore for so long.
Letting It Out
Day by day, I let my emotions out. I journaled. I talked to my therapist. I talked to my friends. I talked to my parents. I acknowledged whatever it was that I was feeling and didn’t scold myself for feeling that way. I just felt.
And as I let the weight of my experiences wash over me, I began to grieve. I grieved the person I could have been if I hadn’t been so inhibited by insecurity. I grieved the pain and the sadness that I felt throughout high school.
I grieved the times that I denied myself expression of how I had actually been feeling. I let it all out and I cried. But then, I moved on.
My body was light. My mind stopped spinning. And I actually felt grateful for everything I’d learned because of having XLHED. For the first time in my life, I genuinely felt as though I could transform my experiences into a meaningful purpose.
Finding My Place
Since learning to actually acknowledge and process my emotions, I’ve felt immensely better and found a place in the ectodermal dysplasias community. I’ve learned that being brave is not measured by how stoic you are, but by how authentically you “show up” to life and how honest you are to yourself.
It took more courage for me to actually face my emotions rather than shove them further under the carpet and – spoiler alert – the reward is so much greater for actually acknowledging your true emotions.
It took me quite a while, but I’ve finally learned that having a condition like ectodermal dysplasia isn’t just physical, it’s deeply emotional. Every movement of every day, our body is sending us messages through how our body feels and the thoughts we think. I ask you to consider what might happen if you begin to observe those messages.
Then, once you begin to notice them, what might happen if instead of trying to sweep them under the rug you just acknowledged them. I’m willing to bet, based off my experiences and off three-quarters of a psychology degree, that labeling and acknowledging your emotions will be one of the bravest and most helpful things you do for yourself, at least it was for me.
Kaitlyn Squibb is a guest blogger for the National Foundation for Ectodermal Dysplasias. She lives in New Hampshire and will graduate in May with a bachelor’s degree in psychology. Next, she hopes to pursue a master’s degree in clinical mental health counseling. You can read more about Kaitlyn and her experience with ectodermal dysplasia on her website, Kate’s Candor.