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The Challenges of Dermatillomania Go Beyond the Scars It Leaves on Our Bodies

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Having a disorder that is only now gaining recognition has taken a toll on many people who compulsively pick at their skin — people like me, with excoriation disorder (aka dermatillomania), who have not always felt acknowledged by the medical community. 

From body image issues to feelings of isolation, embarrassment, and shame, the psychological effects of having dermatillomania can be more challenging to deal with than just the scars it leaves on our bodies.

I was too young to build a positive sense of self before the disorder. At 10 years old, my upper chest and back were filled with what I thought was an early onset of acne that I usually picked at. I wore turtleneck shirts and tight-collared t-shirts in elementary school to hide it but hadn’t learned how to hide the cluster of pick marks on my face. This made me a target for insensitive kids who would occasionally hurl insults about me not washing my face or eating too much chocolate. This made me feel like I was too different to be accepted by others. Even adults gave uninvited opinions about my appearance. I learned that I had to hide my body and face as best as possible to avoid being confronted in public — just for existing.

I gained a distrust of the health care system. As a child and teenager, mental health care professionals did not take my skin picking seriously. There was no diagnosis for the action, only dismissive responses that it would go away on its own or with the help of medication. With dermatillomania destroying my body image during those vulnerable years of my life, I knew I wasn’t being heard. Instead of gaining access to proper treatment, like I finally did at 28 years old, I ended up being hospitalized a few times and put through a few ordeals within the system that tainted my perspective on the willingness of some providers to want to actively help their clients.

One time, after having an assessment with a mental health nurse during my later teen years when I was suicidal, she told me I didn’t need help — I just needed to grow up and make the choice to stop, like she had supposedly seen so many other people do. The misinformation, ignorance, and lack of willingness to help can lead to judgmental and inaccurate comments being made by doctors in all areas of health care. Hearing these comments can cause people with dermatillomania to be fearful that all practitioners will ignore our pleas.

Secrecy became a method of survival for me. I believed what people couldn’t see didn’t hurt me. If only my facial marks were visible, people could easily believe it was from acne — not anything else. In my senior year of high school, I was misdiagnosed with a skin condition called lichen simplex chronicus, which made me think I picked my skin because of a physical issue, not anything psychological or neurological. But at the end of 2004, during my first semester of university, I was diagnosed with psychogenic/neurotic excoriation, which is another term for this condition, and I blamed myself for not being able to stop picking. My shame resurfaced, and I felt it was safer for me to keep at arms length from people so they wouldn’t have to learn about my humiliating “flaw.”

Lack of awareness and knowledge made me feel like a “freak.” With hardly any information on dermatillomania in the literature a decade ago or available online, how could anyone understand me and the challenges I faced by living with this condition? When a professional in a trusted position can’t understand you, how can they help?

Professionals who judge, mock, or dismiss a person with a body-focused repetitive behavior (BFRB) can contribute to feelings of unworthiness and isolation for people with BFRBs. I felt like a “freak” because “I couldn’t stop the mess on my body, let alone the mess in my head that made me pick at my skin.” With no one in my realm having access to information about this disorder, I have had to inform them along with myself and be my own advocate.

I didn’t believe I could ever be loved by a partner. I thought no man could be attracted to a person who had the marks I did, and if he was, he would run upon learning about this disorder. Years ago, having dermatillomania made me feel grotesque, which furthered the social isolation I experienced. The stress of my appearance, along with hours lost in front of the mirror, caused me to have to quit university, which is when I also became housebound for two and a half years. I felt unworthy of love from anyone. Since I had so many problems, how could someone love me or why would they choose to? Why would they choose me if they could choose someone without this type of problem?

It challenged my ability to persevere. Having an uncontrollable disorder caused me to doubt my abilities in most areas of my life. While I was able to maintain high marks in advanced high school courses, trying to hide an all-consuming secret fueled by anxiety challenged my strength to overcome adversity. Releasing the memoir, “FOREVER MARKED: A Dermatillomania Diary,” at the end of 2009 was a way to fight back against the standards of what is taboo in society. It was a way to break free from my deepest fears of socially alienating myself by coming out with my disorder. I also wanted to put it out there to create a general dialogue about dermatillomania while letting other people who have it know they aren’t alone in the struggle.

I spent too many years feeling alone. This could be the main reason I wanted to raise awareness about dermatillomania. From the time I was a child to when I was 24 years old attending my first conference run by the TLC Foundation for BFRBs (shown in “Scars of Shame”), I never had the opportunity to meet anyone else who struggled with skin picking. By connecting with others who passionately care about the future of awareness, I found a second family within the BFRB community that continues to inspire me to do whatever I can to help the cause.

Without dermatillomania, I would have never met the incredible people I have. Many of us have been teased, rejected, and have had to deal with other people’s ignorance about these disorders. Whether it’s through one of many support groups available worldwide or by attending a TLC conference, meeting someone else with parallel struggles can be one of the most validating experiences for a person with a BFRB. If there aren’t any support groups in your area, you can contact TLC about how you can create one or check their website for information about BFRB-trained professionals.

October 1– 7 is Body-Focused Repetitive Behaviors (BFRBs) Awareness Week! Learn more about what you can do to raise awareness through the TLC Foundation for BFRBs.

Originally published: September 14, 2016
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