What It's Like to Live with a Rare Face Malformation

This article originally appeared on VICE France.

"It's time," says the dermatologist standing in front of me, pushing her anesthetic needle through my lip. Twenty minutes after the excruciating pain, my lips have swelled to a size I can barely describe. I pretty much look like an old Botoxed woman who's also been tortured during an interrogation. I am dangerously close to freaking out. All this is the result of an attempt to get rid of the horrible growth on my lips, a direct symptom of a rare genetic disorder I suffer from.

I am 25, and I lead a pretty ordinary life. I work as a teacher and hang out with the same friends I've had since middle school. I love family gatherings, watching soccer, and drinking with my friends. But at 16, I developed some heart problems and was monitored by a team of doctors at my local hospital. A few months later, I was told I suffer from an extremely rare illness called the Bannayan–Riley–Ruvalcaba syndrome and had to have open-heart surgery.

According to my doctor, there are only two other people who share that joy in France—my dad and some dude from Toulouse. It's not clear how many people live with this syndrome, but according to websites that specialize in rare genetic illnesses, Bannayan–Riley–Ruvalcaba is a "a rare congenital disorder characterized by hamartomatous intestinal polyposis, lipomas, macrocephaly, and genital lentiginosis." In English, that means I suffer from a bad stomach, dark blotches on my genital area, and my skull is significantly bigger than most people's. But the most noticeable symptom is the tumor-like growth I carry on my lips, which is more difficult to deal with than anything else.

When I showed up at the hospital for the first time, my lips immediately fascinated all the physicians on call. Since this is a progressive disease, its signs were still rather faint by that stage. It took several appointments with the most specialized doctors in the country to get diagnosed with the syndrome in the first place.

Having a heart defect is not that big of a deal in itself. I feel that nowadays, the heart is an organ that doctors understand well, and I know that there are many treatments available. My problem is that as my disease evolves, it becomes more and more visible.

According to the sociologist Erving Goffman, social relationships are formed in what he calls "a scene." That's to say humans perform our identities by using different elements of our personal facade—status, clothing, and individual quirks. Goffman also writes that we can speak about stigma when someone has a very peculiar characteristic that continuously comes into play in his or her relationship with others.

I felt like the growths on my lips perpetually redefine my relationships with people. During most social interactions, I had to make a real effort to keep my interlocutors interested, as they would almost always be more intrigued by my malformation. People very rarely look me in the eye—they prefer to stare about four inches below. I often feel like I am reduced to this growth.

When the growth on my lips began to develop, I had a girlfriend who I had been seeing for about four years. She liked to say she didn't care about the way I looked. I was 17 when we met, and my mouth did not look as bad as it would come to later—though at the time the malformation was already quite noticeable. She didn't seem to be bothered by the gradual change, either. However, when we split up, she told me, "Don't worry, at some point you will find someone to love you for who you are."

I developed a pretty serious complex. Any mention of my flaw would make me highly uncomfortable and unable to string a sentence together. I was single and started staying at home. People would advise me to go out and meet people, but I was incapable of it. My work of course suffered, too. I hid behind the pain of a relationship that ended badly, to justify my passivity.

Last year, at 24, I decided that my period of celibacy and inaction had lasted long enough, so I decided to go through with an an experimental treatment that my doctor had recommended back in 2007. What had kept me back then was the difficult healing process, but I'd finally had enough of looking like a giant problem.

I went to see my old doctor, who introduced me to a new dermatologist. "We are going to try to burn these growths, step by step," she said and added that she could not guarantee the operation would work because it hadn't been tried much before. She did need me to know that it would be quite painful.

And so three months later, I find myself in a sterilized room, surrounded by doctors and nurses in scrubs. They all lean over me, acting a little like they're at the zoo. Gawking at my mouth, the nurses can hardly stop themselves from making faces or awkward exclamations. Then comes the needle, followed by the pain the doctor had warned me about. A little while later, I'm woken up by another nurse. "Do you want a bandage?" she asks. I nod and head back to my apartment on the metro.

For days, I couldn't say a word. I initially agree to hire a nurse to come to my home every morning and help me clean the wounds, but it quickly becomes apparent that she has no idea how to deal with an illness no one else has. A couple of days in, I decide to face the dreadful healing period on my own and let her go.

After three weeks of bandages and healing creams, the stitches come out smooth. Two months after that, I undergo another operation that gives me a normal lower lip for the first time since I was 14. There is only one more operation to go, and I will be able to live again.

Today, my relationships with people are disarmingly simple compared to the last eight years of my life. The horrible pains I used to feel have also disappeared. It's such a joy to feel normal again—to make new friends, to be looked at without people covering their faces, and to experience the forgotten thrills of flirting and being reminded of how complicated relationships can be. Gathering the courage to go through a year of operations saved me from a life of bitterness and resentment.

In retrospect, coping with an unknown condition has been a life lesson for me. I feel stronger now—like I can do anything if I set my mind to it. I am also thankful for everything I have; I will never take my appearance for granted. Yet I am still learning how to think and behave like everybody else.

I honestly did not anticipate how much this operation would benefit me, both from a physical and social perspective. In his work, the psychoanalyst Saverio Tomasella asks whether self-esteem must come before any transformation. To him, self-esteem is the starting point to any attempt at a more peaceful and happy life. I agree with him—my newfound self-confidence has led to ambition, motivation, and a desire to embark on new endeavors on a daily basis.