Trichotillomania - A Hidden Epidemic?
Trichotillomania is listed by the Genetic and Rare Diseases Information Centre (GARD), as well as the National Organization for Rare Disorders (NORD) as a rare disease. In the US a condition is considered rare if it affects less than 200,000 Americans, and are often referred to as orphan diseases. But is this really true? Are there only 200,000 or fewer sufferers – or are there far more, who either go undiagnosed or do not report the condition at all, even in anonymous studies? Trichotillomania has deep roots in self-consciousness, guilt, and shame, and it is widely underreported due to these factors.
Lack of Awareness
It’s possible trichotillomania is far more pervasive and affects far more people than we ever realize. Another barrier to obtaining realistic estimates of trichotillomania’s prevalence is the lack of awareness among the public as well as health professionals of the condition. Trichotillomania causes a great deal of emotional distress in the sufferer: embarrassment about their personal appearance, alongside worries about not being “normal”, lead to many sufferers never reporting their condition or seeking treatment. In fact, many will go to great lengths to avoid detection, including wearing wigs or hats and avoiding regular doctor visits, even for conditions unrelated to trichotillomania. The lack of awareness of that habitual hair pulling can develop into more than just a bad habit and can be classified as a clinical disorder means that many people feel that their hair-pulling habit is not serious enough to warrant medical or psychological attention, even after it begins to hinder their everyday life and appearance. Furthermore, the general lack of knowldege and understanding about the condition within the medical and research fraternity leads to many people feeling that even if they want to talk about the condition and get help, there are few places to turn where they won’t be shamed or misunderstood.
The Real Numbers
As many as 11 million Americans may pull their hair out at some point in their life, and as much as 2% of the general population may suffer from trichotillomania. Some studies put the estimated number of people living with trichotillomania at 8 million people globally, with 2.5 million Americans experiencing the condition at some point in their lives. Because the of the fine line between habitual hair-pulling and compusive hair pulling, and because people with trichotillomania may deny that their hair-pulling behavior is actually problematic, the number of people who report pulling out their own hair versus the number of people who fit the criteria for trichotillomania may be skewed. Upwards of 10% of college students, for example, report that they have pulled out their own hair, yet only 1% of the respondents actually met the criteria for trichotillomania; the true percentage, then, may lie somewhere in the middle as people may sometimes try to downplay the severity of their hair-pulling habit, or may lack insight into the level of impact the behaviour has on their daily functioning.The statistics may be further skewed by the low number of males who report trichotillomania; studies show that women are up to 10 times more likely to suffer from (or at least report) trichotillomania. However, it is easier for men to disguise the disease and there is much less pressure on men in terms of hair loss. Male pattern balding is so common and so publicly accepted that, for many men, it is easier to say they are balding than it is for them to say that they are suffering from trichotillomania.
One interesting thing to note is that prevalence among children is seven times higher than prevalence among adults. The most common age of onset is between 12 and 13. While it is likely true that children suffer from trichotillomania more than adults, it’s also possible that the number of children presenting with the condition has to do with parental oversight and behavioral supervision in school. It’s much easier for an adult to have privacy and hide their condition than it is for small children, who are scrutinized not only by their parents but by neighbors, relatives, family friends, teachers, and other children. A mother will certainly notice if her child is pulling out his or her hair, because that child is more likely to indulge in the behavior in public, and doesn’t have the financial means or insight to cover the damage with make-up and wigs.
The importance of research
Studies that rely on the diagnosis of trichotillomania for accurate prevalence rates may also be misleading, because even if someone goes in to a doctor for hair-pulling it can often be hard to make a diagnosis of trichotillomania. Before diagnosing, the physician must be sure that there are no other possible biological or psychological causes for the hair-pulling and this process of elimination can be costly for the patient. Knowing how many people are truly affected by trichotillomania each year can take us a long way towards addressing it as a serious condition and removing the stigma attached to it. Despite its relatively rare occurrence, it’s extremely serious, with 91% of sufferers ending up hospitalized as a result of the condition. Even if trichotillomania only affected a few thousand people per year, it’s important that those few thousand feel that they are not alone so they can confidently seek treatments that will actively improve their lives. But there are more than a few thousand, probably a few million, who suffer in silence not knowing there is a whole community of sufferers to turn to for support. Important foundations like TrichStop, the Trich Learning Center (TLC), and the Canadian BFRB Support Network have done wonders in terms of outreach and spreading awareness, allowing people suffering from trichotillomania to feel supported and understood. The new generation of bloggers, vloggers an social media users are also playing a more and more significant role in raising awareness and the destigmatization of trichotillomania. Increased awareness and realistic prevalence statistics will positively influence the medical and research fraternities to channel resources toward developing a more in depth understanding and hence treatment options for trichotillomania. Just like any other mental illness, admitting the problem is the first, and sometimes hardest, step towards recovery. If we can continue to support groups that provide resources and information on trichotillomania, we can continue to change lives and help people from all over find a common path towards freedom.