Inside the Nightmarish Body Habit Disorders That Affect 'One in 50 People'
Roughly two percent of the population exhibit at least one body-focused repetitive behaviour, such as obsessive skin picking or hair pulling, so why isn't more treatment available?
We all have habits that we find difficult to stop. Some of us chew the ends off pens, others spend real human money on Candy Crush. Neither of those are great, but at least they're relatively harmless. Some of us, however, aren't so lucky; some of us bite our nails to the point that the skin on each finger is always in a state of bleeding or scabbing over, and each nail is only a millimetre long.
Evelyn, a 24-year-old student I spoke to, told me she compulsively picks at blemishes, tiny scabs and open wounds on her head and face. These sores often hurt and bleed, yet the small scars dotted around her face illustrate the fact she's repeated this process thousands of times regardless, because the picking is something she can't control.
The medical term for this behaviour is excoriation disorder, more colloquially referred to as compulsive skin picking (CSP). The disorder is part of a family of self-grooming behaviours that fall under the umbrella term Body-Focused Repetitive Behaviours (BFRBs). Other forms of BFRBs are compulsive hair pulling (trichotillomania), compulsive nail biting (onychophagia) and compulsive biting of the inside of the cheeks.
Roughly one in 50 people exhibit at least one BFRB. That's 2 percent of the global population, or around 146 million people. However, Jennifer Raikes, Executive Director of the Trichotillomania Learning Centre (TLC) in the US – one of the world-leading institutions dedicated to ending the suffering caused by BFRBs – told me via Skype that TLC actually "see skin picking as potentially higher than" this conservative estimate.
Dr Jon Grant is Professor of Psychiatry at the University of Chicago and has been studying BFRBs for almost 20 years. Considered among the foremost scholars in the clinical study of BFRBs, he defines them as "problematic, non-functional behaviours directed at the body, with a loss of control, and resulting in negative consequences".
Principal CBT therapist Simon Darnley is Head of the Anxiety Disorders Residential Unit at NHS South London and Maudsley (SLaM), and Head of Clinical Pathways for Lambeth Mood, Anxiety and Personality Disorders. With over 20 years of experience working with habit disorders, he compares them to the way many of us eat popcorn at the cinema. Before you know it, your fingers are scraping the bottom of the box and all the popcorn is gone.
BFRB sufferers often speak of a trance they go into when they pick or pull or bite, only realising after some time that they have been doing so. Also like our popcorn ritual at the movies, many sufferers have exclusive situations or environments when they engage with their compulsive habit, like sat in front of the TV.
BFRBs are often mistakenly associated with obsessive-compulsive disorder, but it's common for people to experience their compulsion without obsessive thoughts. Jennifer Raikes from TLC told me that "depression and anxiety can coexist with these disorders". Indeed, a lot of the time, BFRBs can be linked with stress and can be part of a bigger problem like body dysmorphic disorder (BDD). However, people can also be perfectly relaxed and content with their lives, save for the fact they can't stop compulsively pulling their hair out.
These habit disorders are likely genetic. The student I spoke to told me that when she began to open up about her skin picking, her father revealed that his mother (her grandmother) has the same disorder. BFRBs are also closely connected to the nature of addiction. One of the world's leading BFRB therapists, Dr Suzanne Mouton-Odum, runs a private practice in Houston, Texas. She confirms that BFRBs are not "the result of earlier trauma" or "bad parenting", but are in fact "complex human behaviours that require complex intervention", i.e. there's not an easy fix.
BFRBs typically start in the early teens, and are very common among males and females alike. For around 2,500 years, BFRBs have been on the radar of the collective human consciousness. In Epidemics Book 1, the ancient Greek physician Hippocrates tells young doctors, "We must note whether he plucks his hair, picks at his skin or weeps."
At a recent BFRB conference at King's College, London, Dr Mouton-Odum asked the audience how many of those suffering from BFRBs would want to get rid of them if they could. Many hands shot up into the air. She then asked that if they could engage with picking or pulling without any hair loss, skin damage, etc, would they still want to stop? Only two hands remained up in the air. A significant element to BFRBs is that they actually help people in some way, whether it's that they soothe the nervous system or that they provide relief from discomfort.
So if BFRBs have positive affects, why is it important for people to stop engaging with these behaviours?
Over time, these disorders can erode a person's courage, hope, social relationships, self-esteem and even have detrimental effects on educational and career prospects. A person's quality of life can be deeply affected. I've been told of one woman who became a nun as a result of suffering from BFRBs. Jennifer Raikes has "known people who have felt suicidal" as a result of their picking or pulling.
People with BFRBs often avoid going to the doctor, but this can lead to potentially dangerous consequences, as problem areas can be the eyelashes or the pubic area, i.e. sensitive areas at risk of infection. Some people eat the hair they pull and, in the most extreme cases, people can develop a build-up of hair in the stomach that is hard to digest and can become life threatening if not detected and extracted.
I spoke to a 42-year-old merchandiser called Sarah about her struggles with BFRBs. She told me, "The most difficult thing is the emotional suffering for me, the shame, the scars and the disliking of what I do."
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How much research has been dedicated to BFRBs? Hardly any. How available is effective treatment? Jennifer Raikes claims there is "a real dearth of specialists in this field, not just in the US". There are just under 300 specialists based in the US listed on the TLC website, with a handful based in Canada and one in Mexico. The situation currently looks pretty bleak if you're in need of treatment for your BFRB and not based in North America.
I asked Dr Grant why he believes BFRBs are so under-researched and underfunded. He said that the main reason was that "people consider them simply habits that one should be able to change on one's own instead of complex behaviours that result in problems for people".
UK-based Simon Darnley believes "there is treatment out there" in the form of "anxiety therapies" conducted by "good therapists". The problem is that he typically sees five to 10 cases per year.
Why so few cases? Jennifer Raikes spoke of a "catch 22" situation where "people who have these disorders do not talk about them". There is little public awareness of the existence of these disorders, so people don't know they even have something that requires treatment.
Shame is what sends people into the shadows. Mr Darnley says the lack of awareness of BFRBs is due to "shame and embarrassment as people partly believe their BFRBs are their own fault". People need reassurance that their habits are not their fault, and that they should feel confident to address them and talk about them.
Taking a hard-line approach with someone and telling him or her to stop something they can't control only perpetuates the shame they feel and subjugates them into more silence. It's like ordering someone with a broken leg to stop limping. There's a reason for the limping, and that's a broken leg. There's also a reason for the existence of BFRBs. They are incredibly complex behaviours, but they sometimes seem trivial when spoken of. They come with the confusing baggage of mixed feelings and paradoxical emotions, and recovery cannot be attained without correct therapeutic intervention and time.
"GPs need to start asking about these behaviours, and healthcare providers need to educate themselves about BFRBs and how to treat them."
Lack of a call for supply inevitably results in a lack of demand for services. The five to 10 cases that Simon Darnley typically sees each year are only those extreme cases where people have reached breaking point and have nowhere else to turn. Applying our earlier estimate of 2 percent to the population of the UK, there are currently 2.3 million British people whose quality of life would be improved significantly if a strong network of BFRB treatment providers was established here.
What is the best way to treat BFRBs? Simon Darnley says, "We know CBT (Cognitive Behaviour Therapy) is really helpful when combined with HRT (Habit Reversal Training)," before stressing that "understanding yourself and your environment" are important checkpoints on the road to recovery.
What steps can be taken to improve the lives of those living with BFRBs? When I put this to Dr Grant, he answered, "GPs need to start asking about these behaviours, and healthcare providers need to educate themselves about (BFRBs) and how to treat them."
Simon Darnley calls for "more research into other habit disorders" and also wants "more people to come forward for treatment" in order to "increase awareness".
Sufferers of BFRBs can take action right now. They can start support groups, which would amplify their collective voice. Jennifer Raikes certainly supports this idea, as she regards support groups as important tools for "shame-lifting". She told me that "one person has huge ripple effects with any action they take" – and she should know, being one of the founding members of the New York City Trichotillomania Support Group, having suffered from hair pulling and skin picking for many years. Jennifer would like to see more "treatment providers who are experts in this field", a hope I'm certain sufferers would also like to see fulfilled.
Names of BFRB sufferers have been changed
For more information about Body-Focused Repetitive Behaviours, visit trich.org.
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