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When I Realized the Connection Between My Rare Disease and BPD

Editor’s note: If you struggle with self-harm, the following post could be potentially triggering. You can contact the Crisis Text Line by texting “START” to 741-741. For a list of ways to cope with self-harm urges, click here.

When I was young, I learned very quickly from the world that I was not to smile or to talk. I learned I was ugly, rotten, and disgusting. No one should learn that.

I felt raw. I felt exposed and vulnerable to the world, both physically and mentally. I would eventually learn that this was nothing to be ashamed of, despite the message society sends to people with disorders and disabilities.

I have a rare congenital disorder known as amelogenesis imperfecta (AI). It affects only 1 in 14,000 to 16,000 people in the United States, which is about 0.007% of the population. AI is a disorder of tooth development, which affects the formation of enamel and results in teeth that are discolored (yellow, brown, grey), pitted, grooved, brittle, and unusually small. It may be clinically associated and cluster with other rare syndromes, including nephrocalcinosis (kidney disorder), skeletal anomalies, cone-rod dystrophy (vision loss), epilepsy, dementia and intellectual disability, and nail or bone abnormalities.

I have not met or heard of another person with AI, other than those who explain they have or know someone who has some occasional spots on their teeth. They mean well, although it does remind me of when someone tries to explain they know what it is like to have an anxiety disorder because they have been afraid before, or they know what it is like to have a chronic illness because they have been tired before.

As a child just old enough to brush her teeth, I thought if I brushed long and hard enough, I could brush off the ugly. It became an obsession. I did not understand any better. Two to four hours would pass of me staring intently in the mirror ever so carefully brushing every tooth. My gums bled, stung, and throbbed, but I did not stop. I thought my teeth would fall out or rot my face if I stopped.

a picture showing the author's teeth before and after crowns were put in

I cried. While everyone else was playing games outside, watching a movie, or eating, I was frantically brushing my teeth. I did not always like to eat because the food temperatures or textures were often painful. It felt like I was either digging my teeth into ice cream or trying to rub sandpaper on my teeth. Without the natural protective covering, even the temperature of the air from breathing sometimes brought sharp pain that made my face and body twitch.

It was painful, but I cried because by society’s standards, I was considered ugly. I cried when I looked in the mirror. I would stare at the mirror, hopeless, analyzing my teeth, unsure why I looked like I was rotting away. The distorted image in my mind of what I looked like formed and followed me, including in dreams where my teeth bled infinitely and fell out.

I did not smile, because I thought no one should see what I really look like. I did not want to leave the house, because I thought no one should see my face until I single-handedly fix it.

Adults made comments almost just as often as other children. Dentists did not have familiarity with such a rare disorder. Some dentists would berate me for not brushing my teeth long or good enough, and their excuses when momma-bear confronted them usually consisted of “I must not have read the condition on the chart.”

In my late-teens, I was also diagnosed with borderline personality disorder (BPD), a mental disorder characterized by hypersensitive and intense emotions, an unstable and distorted sense of self, and unstable relationships, thinking patterns, and behaviors. Intense emotional reactions, such as panic and paranoia instead of nervousness, or humiliation instead of embarrassment, can be provoked by seemingly ordinary circumstances. Other hallmark symptoms of the disorder include reoccurring self-harm and suicidal ideations, as well as extreme reactions and preoccupations to real or perceived abandonment, and rejection, and slights.

BPD is described in Dr. Marsha Linehan’s “Cognitive-behavioral Treatment of Borderline Personality Disorder “as “the psychological equivalent of third-degree-burns. They simply have, so to speak, no emotional skin. Even the slightest touch or movement can create immense suffering. Yet… life is movement.”

Similarly, Dr. Jerold Kriesman and Hal Straus describe BPD as “…a kind of emotional hemophilia, lacking the clotting mechanism needed to moderate the spurts of feeling. Stimulate a passion or prick the delicate skin, and they emotionally bleed to death,” in “I Hate You – Don’t Leave Me: Understanding the Borderline Personality.”

These quotes shot straight to my heart. My life has been raw, exposed, and vulnerable, and I lack the “protective covering,” both physically and mentally. Coincidentally, another diagnosis, a rare blood clotting disorder, came in late childhood after my AI diagnosis.

It may have taken years of learning, but I eventually realized every part connects and together, these are all parts of me. My BPD is a mental expression of my AI and blood clotting disorder, and my AI and blood clotting disorder is a physical expression of my BPD. 

With years of self-awareness and learning, I realized the importance of claiming these characteristics as my disorders and my form of being— whether with good or bad parts—rather than view it through the lens of stigma or as my failure or form of ugly. For without this claim, there may be no self-acceptance or peace of mind, no answers, no treatment or management, and no full understanding or respect for the spectrum of human variation.

Yet, as a child, I did not understand that what I was struggling with was a disorder, nor did most people around me. We hide it, or we deny it. We may presumptuously blame it on “ugly” or improper hygiene. I was conditioned to do the same to myself, instead of challenge the world’s standards of beauty, and acknowledge my disorders or disabilities without shame.

I vividly remember my childhood enclosed by the physical and mental pain, countless hours at the dentist, and the trips to a university to partake in a case study on my rare disorder, where they found one of the genes associated with AI. But most of all, I remember the kindhearted dentists who gave me my smile back, and the lessons I learned along the way about myself and our standard of being.

I looked in that mirror the first time my piercing white porcelain crowns were part of me, smiled, then sobbed in the dentist chair. I thought, “I may be exposed and vulnerable, and I may have disorders, but they are part of me. I am empathetic, passionate, and I am strong—I have a strong porcelain shell.”

a picture of the author with her new crowns

“This crack in your facade can be the first glimpse you have had to your real self. Ironically, your newly experienced vulnerability — the feeling that you are now exposed for all the world to see, that are your weaknesses are now visible — is the very thing that can save you.” — Merri Lisa Johnson, Girl in Need of a Tourniquet: Memoir of a Borderline Personality

If you or someone you know needs help, visit our suicide prevention resources page. If you struggle with self-harm and you need support right now, call the crisis hotline at 1-800-273-8255 or text “START” to 741-741. For a list of ways to cope with self-harm urges, click here.

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Getting Images photo via agsandrew