The TLC Foundation for BFRBs Young Adult Action Council met with a variety of community members from underserved populations that shared their experiences within our community to grow better understanding and celebrate diversity.
In this article, they talked with people from the international community about their experiences with BFRBs.
What is your first name and where are you from?
Myriam: I'm Myriam and I live in Paris, France.
Guaier: China.
Shai: My name is Shai. I grew up in New York, but have lived in Israel for the past 8 years.
How would you describe your race/ethnicity and your BFRB status?
Myriam: I live with my family, my father is Algerian and my mom is French so I'm mixed. We are something like upper-middle class and I'm lucky to be able to buy what I need for my skin or doing therapist sessions.
Guaier: East Asian; Mild TTM.
Shai: I'm Jewish, and affiliated with the Ultra-Orthodox Hasidic community. I'm mostly a skin-picker, picking for hours a day. I started with pulling the hairs from my legs and eyebrows. I then got down to the root and hence the skin picking. I still do both but its the skin-picking that is the primary cause of the hours killed daily and severe skin damage.
What has your BFRB journey been like thus far? How has it challenged you, how have you embraced it?
Myriam: I have been picking for 8 years now, and it's a catastrophe in my life. I pick at my back, arms, and legs sometimes, but most of the time on my breasts and face. I'm always hiding my skin, I don't wear low neck shirts, or tops that have a back "open". I don't go to the pool. I don't go outside without makeup. But this year I've worn a swimsuit for the first time in 6 years. And having this big issue [skin picking] helps me to accept the other complexes of my body. I mean that the day I will be healed; I will not be afraid of my non-flat tummy or my thick thighs or my weird knees. So the major problem is the shame of my skin because I cancel a lot of things, or I'm really late, and the time that it takes -- the longest time I've spent picking was 6 hours.
Guaier: East Asian; Mild TTM. I started pulling my hair in middle school. I felt I wasted a lot of time pulling and concentrating on split ends. I also liked to cut my split ends with scissors sometimes. It was even difficult to concentrate on work because of it. Last summer, I decided to cut all my hair and now I maintain a buzz cut. I stopped pulling after, but I still notice that I love to touch my hair.
Shai: So far this has been a really tough and tiring journey. I first discovered hair pulling and skin picking around the age of 13. I loved it. I loved the 'break from reality'. It was my time out. I would look forward to 'my time'. I experience this behavior as grounding. I'm rather scatter-brained and this made me feel connected to myself somehow. Picking became my 'drug of choice'. My way of processing emotion. Whether I was happy, sad, frustrated, tense, overwhelmed, or just satisfied- I picked (and had no clue why). Of course, in the beginning, the damage was rather light and in areas easily covered up. Over the years it has only gotten progressively worse to the point where I once counted 400+ open scabs and infections which drove me to the emergency room and required oral antibiotics. I've been in a 12-step based outpatient program for other addictive behaviors, and although I never actually focused on the picking, it has definitely improved as well. For me, learning how to feel, name and share emotions instead of acting on them was a biggie. Basic acceptance of who I am (something I had to figure out from scratch), my needs, abilities, and limitations has taken me far as well.
How are hair, skin, and appearance valued in your community? What value or importance do these things have to you personally?
Myriam: In France, when you're an adult you're supposed to have clear skin, no acne or scars, people are really judgmental, in particular in Paris. You're not supposed to put too much makeup on your skin but have a natural good smooth skin. It's the same for the hair, they are supposed to be shiny and well groomed, Parisians women often go to the hairdresser.
Guaier: They are valued a lot in my culture, but I have learned to give myself confidence and not care about them so much.
Shai: One of the pluses living in a sheltered community like the one I grew up in, is no exposure to the internet and media. There is very little emphasis placed on beauty and physical appearance. Saying no to a possible dating match (generally prearranged) based on looks is looked down upon and considered petty. The emphasis is placed on the beauty within, good deeds, and character. I personally never invested much in my looks and did not care to do so. I'm not sure however how much of it was cultural and how much of it was coming from my transgender identity (a term I had no idea existed till a couple of years ago.) For me a definite (albeit subconscious) motivator was hurting the female body I was born in which I felt betrayed me. I wanted to see her ruined, and no damage was ever enough. I have not transitioned, and do not know if I will, but have come to accept my body as a part of me equally deserving of love and acceptance. I am who I am regardless of my physical anatomy.
What is the attitude toward mental illness and treatment within your community?
Guaier: Most people do not recognize mental illness as a big issue and the treatment is lacking. People regard mental illness as almost shameful.
Shai: It's a big deal indeed. Parents are very scared to expose their child to anything they are not familiar with which they may interpret as a threat to their lifestyle. Although we have many qualified mental health providers within the community today, many are still skeptical and fearful to reach out. In general, it has gotten better over the years, but many will still withhold help due to the stigma attached.
What do you think are the attitudes towards BFRBs in your community?
Guaier: I do not have enough samples to know their attitudes, but I do know most people in my community do not have awareness about BFRBs.
Shai: Mostly, it is not recognized as a condition. It is normalized a lot. It's seen as a habit just like any other which you are meant to conquer using all standard techniques. The inability to stop is seen as lack of willpower and self-control. In other words- I took the blame for my condition, and experienced a lot of shame for my inability to 'just stop'.
Do you feel that people in your community face different challenges with BFRBs than Americans? If so, what are these challenges?
Myriam: The thing is that the European people don't know they have a problem that has a name (skin picking or hair pulling), so they don't know there is a community (it's better in Deutschland [Germany] some people say.) I think it will be great to have prevention about it in class like they do about depression. Or influence people talking about it. As I've said, I have the impression that in France we are supposed to be good looking all the time, with good skin and hair, we are really conscientious about it. My American friend says that Americans can go out in sports clothes or pajamas or large sweaters and leggings, you don't see this often in France.
Shai: Growing up religious we kept all laws and sub-laws of the Bible stringently. One of the laws of the Sabbath involves the prohibition to excoriate anything from the skin, cause bleeding, or hair-pulling. With all my willpower, I could not stop picking on the Sabbath. This made me feel awful, like an apostate. Applying standard make-up is prohibited as well, and with my picking tendencies all makeup was totally cleared only hours into the Sabbath and replaced by fresh bleeding wounds. I felt like a living advertisement of 'no self-control'- something so fundamental in our culture. Everyone I knew that picked, pulled, or bit their nails were able to stop on the Sabbath. They may have forgotten and done so out of habit but as soon as they paid attention to what they were doing, they were able to stop (as far as I know, although I don't believe it today...) I, however, knew what I was doing, grew frustrated at what I was doing even while doing it, and was unable to stop. This did not stop me from going out to meet friends and family. I would tell myself that the intense shame I was experiencing was well deserved and 'the least' I can do to atone for my lack of self-control.
I obviously did not speak to anyone about this as the admission was just too embarrassing. It was only at the age of 22 that I opened up to a friend and shared my secret and how 'bad' I was. She insisted on calling a Rabbi right then and there to ask about the picking. That Rabbi was thankfully familiar with Dermatillomania, apologized for my years of silent suffering, and told me that being that this is something I have no control over, it was no 'sin'. He strongly encouraged me to try therapy combined with medication. That lightened the burden of guilt and shame significantly. It was the first time I got the message 'This is not your fault. You are not consciously choosing this. And you cannot stop it with your own will-power either.'
To the best of your knowledge, what BFRB treatment options are available to you?
Guaier: CBT? I'm not sure.
Shai: I only know of one therapist that specializes with BFRBs. Many others who I've met, did not recognize it as a condition. I found this extremely distressing as this meant getting a fine dose of 'normalization', a therapeutic model that while at times appropriate, felt awful coming from a therapist saying that this is 'normal' behavior. Really? Did you see what my skin looks like? Do you have any idea what it feels like to want to stop, and have no control over your own ten fingers? But after opening up this shameful secret and getting that as a response, I felt too invalidated to even go there.
What do you think are the biggest barriers to accessing treatment for BFRBs for members of your community?
Myriam: It's more difficult because sometimes professionals aren't aware of what our disorder is, even psychologists. I mean ... nurses don't know. Doctors don't know about it. You have to search for people who are informed about these disorders, and there are not a lot of them.
Guaier: The biggest barrier is probably the population with BFRBs do not know about their condition and they do not even seek treatments.
Shai: Lack of awareness. I have yet to see a single article in our newspapers or magazines bringing awareness to BFRBs. They place tremendous focus on spreading awareness of mental health conditions in a general attempt to defuse the stigma surrounding therapy- but [BFRBs] have simply not made its way in yet.
How can The TLC Foundation for BFRBs support people in your community with BFRBs?
Myriam: There are less resources in France and not everybody speaks English. We have a great website about it created by a specialist– A psychologist in skin picking and hair pulling and a page on Facebook but not a lot of things. They should do some prevention or talk about it on TV because I didn't know the name of my disorder until 3 or 4 years, and I have had it for 8 years.
Shai: I would love to help bridge the gap and get help into our circles, as many do not have the courage and/ or resources to 'go out there'. I feel honored to be given this opportunity to be a part of the amazing work you do. Joining the [TLC] conference this past April has been the best thing I could've done for myself. Being with so many others who 'just get it' was extremely comforting. There is an undercurrent of mutual understanding that breaks through the barriers of race, ethnicity, gender identity, and socioeconomic status that dominate most of our relationships. My heart is full of gratitude, and I look forward to helping spread your work to others who can benefit from joining our wonderful TLC family.
The TLC Foundation for BFRBs strives to represent their community in the most accurate way possible and is constantly looking for ways to include all members equally. These interviews shed light on the importance of understanding body-focused repetitive behaviors and how to manage them within different cultures. TLC and the Young Adult Action Council thank those who were willing to share their stories.
