By Erica Merriweather
Sharing this story has had rewarding points and points where I wish I didn’t have to say anything to people who ask, or pretend they don’t want to know, “What happened to your teeth?” I usually start talking to people about my condition out of the blue because I’m afraid they’re going to make the first move and either make fun of me or have pity for me.
So here it goes.
How I Coped
When I was two years old, I cut my first tooth. Ironically, I found out later that I only had the capability to produce 19 to 21 teeth. My mom and dad didn’t see any significance in it, and it surely wasn’t shared with me as I grew up.
My parents weren’t able to get me braces, so they left it alone. In fact, I went through a lot of trials with being bullied in elementary school and high school because of my smile and its imperfect form. And there began my personal suffering and learning how to cover it up.
I turned inward and became reserved and quiet so I didn’t have to open my mouth. But, I also wanted to be known as someone who could stand out in other ways, no matter how passive-aggressive it seemed at the time.
To keep my smile from being the focus of everyone’s attention, I wore black every day as a symbol of depression for three years. I dressed like a teacher, wearing slacks, skirts, blazers, pumps and makeup that would cause people to inquire about my attire rather than focus on my teeth.
That’s hard to do for years on end. With all of that said, I’m relieved and yet, still troubled about the fact that I didn’t find out exactly what was wrong with my teeth until much later in life.
Getting Answers as An Adult
In fact, I didn’t find out that I had ectodermal dysplasia until I was married close to 10 years at almost 30 years old. I’ll never forget it. My ex-husband was in the Marine Corps, and we were stationed in New York in the midst of doing our family physical exams.
As I sat nervously in that dentist’s chair, I kept thinking of every time I was bullied as a child because of my double shark-tooth-shaped teeth, and I figured he’d be no different. He asked me questions about difficulty in brushing and flossing, and I told him that those were problems because of how my teeth were placed and spaced. I told him about how my gums hurt most of the time.
He then told me that I had a condition, but didn’t tell me what it was. This was weird. It wasn’t until I looked at my chart that I saw the words, ectodermal dysplasia.
Immediately, I thought it was something I did wrong. I was bewildered and asked him if there was anything that could be done about it.
Still Waiting for Oral Health Care
He said he would fix it for $14,000. What was depressing about it was the fact that even though our Tricare covered extractions and cleanings, it did not cover “cosmetic” reconstruction of my teeth. So we left it alone.
I am now 45 and wondering if I missed out on employment because of my smile. I have been divorced from my ex-husband for the past eight years and recently found out that he quite possibly married me to get base housing, so there may have been no love there for me at all. I’m now thinking that that had a lot to do with how I may have actually looked to him. And the price of getting cosmetic surgery has surged up to $47,000 for me now.
I am trying to remain positive, as I have daughters who also have ectodermal dysplasia and question their worth because of their smiles, which I’m sure is a mentality, I passed along to them.
While at work, I lost one of my front teeth two weeks ago, I’m losing the last “fang” and a bottom front tooth. I’m worried about being seen but since I work in customer service as a cashier at Walmart I am not in a position to quit over it.
And yesterday I applied for Medicaid so that I could get dental and was turned away because I “make too much”. I’m sad today…but I have to keep on trucking.
Editor’s Note: Despite the challenges Erica has faced and continues to face, she’s finding strength in sharing her story. She is a vlogger on YouTube and recently started writing a book.
Erica Merriweather is a guest blogger for the National Foundation for Ectodermal Dysplasias. She lives in Arizona with her two daughters, who are also affected by ectodermal dysplasia.