Care and Community in experiences of trichotillomania

This paper is based on recent fieldwork within the community of people living with trichotillomania in the United Kingdom and United States. Trichotillomania (‘trich’) is a compulsive condition that causes people to pull out their own hair. It is considered a kind of body-focused repetitive behaviour (BFRB), an umbrella term which includes hair pulling and skin picking. As well as meeting those who live with trichotillomania, my informants also include families, loved ones, therapists, researchers, support groups, online forums and specialist hair salons. This paper will explore some preliminary insights into the many forms of care for people living and dealing with trichotillomania such as: medical care, self-care, cosmetic care, community care, kinship care, and also considering care of and by the anthropologist. With reference to a selection of my ethnographic examples, I hope that this symposium can help me to decide whether ‘care’ is in fact the best way to for me to make sense of these varying themes.

Medical care for people living with trich in the UK is limited, and many of my informants feel that general practitioners do not understand the effects of trich, or know how to treat it. They told me that some GPs had never heard of trichotillomania before and others gave dismissive advice like “why don’t you just sit on your hands?” In my own attempts to find UK practitioners specialising in BFRBs, I found almost none. By comparison in the US, the number of experts is growing thanks to a non-profit organisation called the TLC Foundation for BFRBs (TLC). During my fieldwork I had the opportunity to attend two conferences run by TLC where families and professionals meet to share knowledge. I believe there are some interesting comparisons to be made between my American informants who have access to professional care, and those in the UK who feel they are left to deal with their condition alone. In particular, it seems that due to a lack of medical care in the UK, for many people self-care practices are the only way of coping.

One example of self-care for people living with trich is the use of barriers, like wigs or scarves to cover hair loss, which helps reduce shame and can help to prevent access to preferred pulling areas. Other barriers include wearing gloves around the house, or band-aids on the tips of fingers.

Self-care is also practiced by keeping hands busy with activities like colouring and drawing, or using objects to distract urges. At a group meeting in London, Lola was showing the members the bean bags she had made at home to help with her pulling. She passed them around and people took turns to move them in their hands, feeling the shape and texture of the beans inside. This opened up a conversation about the different sensory rewards that people get from pulling or picking, and how a tool like this might replace those feelings.

Similar ideas come from the use of ‘Tangles’, plastic bracelets that can be shaped and twisted, which are meant to offer relief from the object rather than the hair or skin. I saw many of these and other various toys and ‘fiddles’ in people’s homes during my time in the field. These might not seem like the typical forms of self-care that Foucault (1986) had in mind, but they are ways that people try to take care of themselves and deal with hair pulling behaviour. They also involve discipline, self-control and techniques of the body that help people to deal with the effects of their condition.

Cosmetic care is another alternative to medical care for people living with trich. Make-up is an essential product for many of my informants whose pulling areas are eyelashes or eyebrows, and becomes an extension of the body, being worn almost all of the time to cover facial hair loss. Some women I spoke to had never shown their faces without make up to their partners. A more permanent form of cosmetic care is often chosen, as two women I met had decided to have their eyebrows permanently tattooed.

The visual effects of trich often capture the attention of public and last year several articles featured stories of women with trich who have been ‘transformed’ by new hair systems. During my fieldwork I spent time in a specialist salon that offers these hair systems, and can be washed and styled like ‘natural’ hair. The professional care received from the staff at this salon is meaningful, since it’s the first many of them have visited a hair salon without feeling embarrassed or worried about explaining their hair loss. After one of my visits to the salon with Joy, I asked her how she felt. She said: “I feel so confident and normal.”  For Joy, and others, visiting these salons and feeling ‘normal’ is in part due to the new hair they receive, but also down to the social relations that emerge from entering into a community of people who understand their experience.

Community care is incredibly important for people living with trich, as most have spent years thinking they were the only person in the world who pulled their hair. In the years before the internet, it was hard for people to know otherwise, but finding out ‘it has a name’ and realising there are others out there just like them, is a moment all of my informants chose to mention. In many ways, the community care that comes from shared experiences is more meaningful than other forms of care, and can be seen through the interactions on some of the Facebook support groups. But the value of community care is most clear at the TLC conferences, where hundreds of children and adults with BFRBs connect, many for the first time. One mother said to me: “There are no handshakes in this community, only hugs.” The strong connection that strangers can feel towards each another through this shared sense of suffering is remarkable, and can often lead to recovery.

During my fieldwork in America I interviewed Monica, who is 15 years old. Towards the end of our chat, I asked her: “Have you ever met anyone else who has trich?” She said no. I then opened up to her about my own experience with the condition, we talked for a while longer about what we’d both been through and she asked me personal questions. At the end of our chat, she hugged me and said she was glad to have met another person who had trich.

Despite the benefits of attending a TLC conference, or a support group, the opportunities to meet fellow hair pullers are less available in the UK. And a frequent cause of concern for my British informants was not having people in their lives who really understood what they were going through. Mary told me she and her husband have been going to counselling together to try and work out his issues with her hair pulling and she told me that she thinks trich affects him worse than it does her.

Most of my informants have memories of being told to ‘just stop!’ by family members, or having hands slapped away when they saw them drifting towards their head or face. But interrupting the urges to pull in this way can cause a build-up of tension and makes many people frustrated and angry. It can also make them pull more through increased feelings of shame or anxiety. So kinship care is contested for people living with trich as the caring acts of family members to help them reduce pulling, often conflict their embodied urges to pursue pulling. The lack of understanding from parents and loved ones into the strength of urges, and the ways that pulling can be soothing or pleasurable mean that their care is often misinformed.

But still, in everyday notions of care, for parents dealing with children who are pulling their hair out, it is distressing. One mother told me that when she first noticed her child was losing her hair, she would sob each night while brushing her daughter’s hair before bed. She now realises that this made her child feel ashamed and guilty, but she admitted that she was ‘grieving’ for what her daughter used to look like, and still hopes that one day her child will have long hair again.

Finally, I would like to consider our role as anthropologists in the conversation of care. From early in my fieldwork, I realised that for some people, I was the first person they had ever spoken to about their condition. For many, I was the first person they had ever met who also had this condition.

This put me in an unusual position as a kind of carer myself, as I became someone to talk to that ‘understood’. I found that my informants would often thank me after our meetings, and some said they felt ‘better’ after talking to me. I was unsure of what to do with this new found responsibility of care, but I decided to embrace it, and I set up support groups in the locations that I was visiting most frequently for fieldwork, starting the first ever UK support group in Edinburgh, and then London. I continue to facilitate these groups every month in both locations as their numbers grow. The implications of this kind of advocacy as an anthropologist requires further consideration, but for now it acts as a reminder of the role we might take on when we ask people to share with us their personal experiences in relation to health and illness. It also asks the question of how do we remember to practice self-care in the field when we begin to care for our informants and worry about their needs?

Works Cited

Foucault, Michel. (1986) “The care of the self: The history of sexuality, vol. 3.” New York: Pantheon