During the first week of October 2014 we observed body-focussed repetitive behaviours (BFRB) awareness week. With the recent reclassification and grouping together of disorders such as excoriation (skin picking) disorder and trichotillomania (hair pulling) disorder as BFRBs; organizations such as the Trichotillomania Learning Centre (TLC) and the Canadian BFRB Support Network launched campaigns to grow awareness of all these conditions. A number of initiatives were marketed such as the purchase and wearing of the green ribbon to raise funds for much needed research and highlight the plight of those suffering with BFRBs. There was also an initiative across the various support and networking sites encouraging people from all over the world to take photographs of themselves holding a sign or poster with a positive message about any of the BFRBs and upload it to social media with the hash tag #IamNotMyBFRB or #BFRBawareness. These photographs were then used by the Canadian BFRB Support Network to create the youtube clip featured here. The hash tag for the video campaign was #SpreadTheWord #BreakTheStigma.
Skin picking disorder, formerly known as dermatillomania, was recognized for the first time as an official medical condition in the fifth edition of the Diagnostic and Statistical Manual (DSM5) in 2013. This is a huge stride toward the increased awareness, improved diagnosis, and development of treatment options for the millions of people challenged by this condition. With its new found status, comes a new name, with the DSM5 referring to skin picking disorder as excoriation disorder. According to the American Psychiatric Association (APA) it is estimated that between 2 and 4 percent of the population could be diagnosed with this disorder, and that resulting problems may include medical issues such as infections, skin lesions, scarring and physical disfigurement.
The criteria for the diagnosis of dermatillomania (excoriation disorder) as outlined in the DSM5 are as follows:
For many, a diagnosis of dermatillomania comes at a time when picking at the skin has escalated to a level of serious concern for the individual who then searches for information on the internet or seeks out professional help. One of the first questions you are asked when you seek help from a health professional is, “How long have you been picking?” Many people cannot give a definitive answer to this question because there is no distinct starting point. Currently there is limited knowledge and awareness of the condition, often resulting in skin picking disorder being under-diagnosed. In recent times, a number of studies have been conducted documenting the age of onset and discussing possible reasons for its onset.
It is not uncommon for people to subconsciously rub, touch, or scratch at their skin, just as it is a common practice for many people to pick at skin imperfections such as acne or blackheads. However, for some, this practice becomes so consuming that it is classified as a skin picking disorder known as excoriation disorder or dermatillomania. Picking your skin becomes problematic when the picking is repetitive and it becomes difficult for the person to voluntarily stop engaging in the behaviour, and impacts negatively on daily functioning. This poorly understood problem often goes undiagnosed and therefore untreated.
According to Angela Hartlin's support website, Body- Focused Repetitive Behaviours (BFRB’s) “is an umbrella term for any chronic behaviour that causes a person to consistently cause physical damage to oneself unintentionally through a compulsive act in order to relieve anxiety.” BFRBs are characterised by direct body-to-body contact, and is collectively grouped among Obsessive Compulsive and Related Disorders in the Diagnostic and Statistical Manual 5 (DSM5). These behaviours can manifest in a variety of ways, with the overarching similarity between the different disorders being the regulatory effect experienced by the person engaging in this behaviour, on overwhelming emotions or cognitive thought patterns such as intense anxiety. There is very little awareness about the various BFRBs and as such it often goes undiagnosed, with sufferers feeling too ashamed to seek help for what they perceive as a ‘bad habit’. Awareness is slowly on the rise though, with compulsive hair-pulling disorder, (trichotillomania) being at the forefront of awareness raising campaigns, research, and worldwide support.
N-acetyl cysteine comes from the amino acid L-cysteine. Amino acids are the building blocks of protein, which plays an important role in almost all biological processes. N-acetylcysteine is a pharmaceutical drug and nutritional supplement that can be found at nutrition and health food stores, commonly claiming antioxidant and liver protecting effects. It has primarily been used as a mucolytic because it breaks disulfide bonds in mucous, thinning abnormally thick mucous in cystic and pulmonary fibrosis patients. It is also used in the management of paracetamol and for sulphate repletion in conditions as autism, where amino acids such as cysteine are believed to be depleted. So then how is this relevant to skin picking disorder?
Group therapy is a shared therapeutic experience which can be engaged in on its own, or as a means of additional support to supplement primary therapy. Group therapy is usually offered to people challenged by similar issues, with the objective to increase self awareness, increase social comfort, provide support, develop skills and promote positive social interaction. Participants in group sessions find discussing their problems with those who can offer genuine empathy gives them a sense of belonging and encouragement. In contrast to individual therapy, group therapy fosters the development of multiple relationships to harness the healing power the sense of belonging has on an individual.
Liz Atkin is a London-based visual artist who has been challenged by skin picking disorder for more than 20 years. She spoke to BBC radio’s Felicity Finch (interview starts at 35:15 into the recording) about her disorder and the impact her art has had on her journey to recovery. Liz grew up in an alcoholic home. She describes a childhood characterized by fear and anxiety and recalls hearing violent arguments between her parents. This may have been when the picking behaviour started to manifest itself.
Liz has discovered the healing power of expression through art, dance and theatre, which she refers to as “harnessing a creative recovery”. Through intimate artworks, photographs and performances, Liz has become an active advocate for Body-Focussed Repetitive Behaviours (BFRBs). Liz is open and outspoken about the distressing impact skin picking has had on her life. On her website, she talks about the intense guilt and shame people with skin picking feel about the harm they are causing to their bodies, and describes the secrecy and isolation that occurs from trying to hide the condition from family and friends.
Body-Focussed Repetitive Behaviours (BFRBs) such as dermatillomania (skin-picking) and trichotillomania (hair-pulling) are common disorders, but are largely undiagnosed. As a result people who have these conditions suffer alone, ashamed, and in silence. The greatest travesty of this is that the loneliness and isolation can be prevented if there was greater awareness and acceptance of these disorders. In an age of social media and the accessibility of digital technology, raising awareness and accessing support is possible and available to more people.
Join the awareness raising revolution, help make a positive change for all affected by BFRBs by getting involved in the campaign, which runs from the 1 to 7 October 2014. One way to raise awareness is to get a BFRB awareness ribbon and wear it proudly. The green and blue ribbon has been adopted to represent this community and help us to connect to each other “in the real world”.
Filmed at the Trichotillomania Learning Center Annual Conference, April 2014 Featuring Jon Grant, JD, MD, MPH Chair, TLC Scientific Advisory Board
Where are we in terms of treatment and understanding of Body-Focused Repetitive Behaviors (BFRBs, or behaviors like trichotillomania, skin picking, nail biting, etc.), where do we need to go and how will we get there? TLC Scientific Advisory Board Chair, Dr. Jon Grant provides an overview of BFRB research to date and the implications for treatment and recovery moving forward.
We took the liberty to transcribe this fascinating lecture:
"So, this is a very exciting year I think for TLC, and you probably have already seen these buttons, right, that some people are wearing that say BPM, and asked about it. So you’re gonna see more of these, and, and so, what’s happening this year is, TLC is launching a much sort of bigger, I think much more impressive research agenda for the forthcoming years.