There are 78 categories of mental and behavioural disorders in the 10th edition of the International Classification of Diseases. Bear in mind that’s not the disorders themselves, that’s just the different types of disorders you can face. The actual illnesses number into the hundreds, from dementia to schizophrenia to trichotillomania.
Wait, what? You recognised the first two, but the third has left you stumped. Yes, like so many psychological ailments, trichotillomania, despite affecting hundreds of thousands of citizens of the UK, has managed to stay in relative obscurity. For sufferers me, that’s pretty frustrating.
So what is it? It took me a long time to come to terms with the complex definition, and all the ways it would affect my body and mental well-being over the next decade, but the simplest answer to that question is this: trichotillomania is a behavioural disorder, which makes you compulsively pull out your own hair.
Luckily today we have people like Rebecca Brown to help raise awareness. Her time-lapse video showing the devastating effect of trichotillomania on her personal appearance over seven years is, despite its sadness, a genuinely heart-warming and informative exploration of the syndrome. It’s no wonder she now has nearly 3 million views.
Unfortunately for me, when I was diagnosed with the condition, it wasn’t so easy to find a role model to help me through.
‘OK everyone, before we start registration we need to have a bit of a chat about Hannah Slapper. Hannah, dear, would you be more comfortable waiting outside?’ – these were the words that greeted me on the first day of Year Eight, as I stared in horror at my form tutor. Of course, everyone’s head whipped round to ogle me as I stood nervously twiddling with my many beaded bracelets and pulling my repulsive powder blue fisherman’s hat over my eyes.
I declined her invitation to leave, naturally. If I was going to be humiliated, I thought I might as well witness it. The fact of the matter was that I had brought this on myself. I had asked her to do this.
‘Hannah has been diagnosed with trichotillomania, and we all need to be supportive during this difficult time,’ she told my classmates.
I clearly remember thinking that she couldn’t have made it sound more like I had a terminal illness, especially as I made eye contact with my classmates, some who were deeply shocked, others (attention seekers) who started to cry. Of course, nobody knew what it was. Not even Mrs Robinson, bless her heart. Even now, nobody knows that this thing has a scientific name, and yet everyone I’ve ever spoken to regarding the matter has either had some personal experience with it, or knows a friend, family member or partner who has also borne my burden.
As I endeavoured to explain what it was to my class on that day, a year after this had started happening to me, I realised how ridiculous it sounded. How pathetic. Even worse, I was 13, which meant I didn’t really express myself in the most eloquent way. The only reason I wanted them to know was because I was trying desperately to stop, and my doctor had suggested hats, to provide a barrier, and beaded bracelets to keep my fingers busy. I knew everyone would be whispering about my breaking of the strict uniform rules, so it was time to get everything out in the open.
Unfortunately, one of TTM’s most prominent side effects is crippling shame. As the compulsive act of pulling out your hair neatly bridges the gaps between OCD, self harm and addiction, there’s always a lovely black vortex of despair waiting for you at the end of every ‘binge’ – preventing you from communicating your feelings, and making you feel alone, worthless and very, very weak.
It may have been vaguely traumatising, but that day in Year Eight, when I stood up and told everyone who I was and why I needed help, was one of the most important steps in my recovery. Instead of sneers and subversive remarks, my friends and fellow peers, even at that truly terrible age, were supportive and sympathetic. For the next few years they made suggestions, they shouted over when they saw me pulling, they put finger puppets on me and told the teachers I couldn’t take notes. Don’t get me wrong, school was mostly miserable, but if I was given a hard time it was because I was geeky and loud, and not because I was balding.
I was given a hard time it was because I was geeky and loud, and not because I was balding.
Being able to talk about it helped, but even then I couldn’t go into the details. The strangeness of TTM is unveiled in the behaviours and patterns that start to emerge with the pulling. It’s not just grabbing a clump of hair and ripping it out. No, this is a more prolonged experience. You have to find the exact perfect hair, in my case, the particularly curly thick ones. They need to feel almost tender as you go to pull them out, so you can really feel it. Sometimes you feel compelled to eat it afterwards, to really relish it. Weird, right?
Imagine going through puberty, and this happening to you. You can’t help yourself. You can’t stop it. You’re so frustrated, because you want to end it, but you just can’t. Not even when your parents beg you or bribe you. I kept a creepy diary where I admitted how much hair I pulled out every day and poured out a worrying amount of self-loathing, fear and frenzied pessimism. I never had the courage to Google it, I never wanted to be faced with what an utter freak I was. So, of course, my family did it for me.
They found a huge community of people suffering from TTM who exhibited exactly the same habits as me. Down to the searching and the favourite scalp areas and the strange horrific fascination with that white root. These forums also brought to my attention the trance-like state I would enter, pulling out hair after hair, without any awareness of time or space. This is a common symptom of TTM, you feel like you’ve been sitting on your bed for less than five minutes, but you ‘wake up’ and realise it’s been over two hours, and you’re surrounded by a pile of little strands of dead protein.
I kept a creepy diary where I admitted how much hair I pulled out every day
In Year Ten, when my round body shape had lengthened and slimmed and I had settled into a routine of classes and friendships that I found comfortable, I stopped pulling out my hair. I have tried in vain many times to pinpoint exactly when and exactly how this happened, but to no avail. I think I was too busy doing well and feeling in control to notice that my mane was growing back. It sounds insane that I got better just as the stress of GCSE exams were starting, but it was a mixture of feeling in control: I knew what I needed to do in order to get the results I wanted, and feeling confident. Looking back at photos from sixth form, I see myself grinning, wearing my curly hair down with pride, and I feel so envious of this version of myself. She’s slim, she feels attractive, she’s acing her qualifications, and she’s got her whole life ahead of her.
You can see where this is going. I went to University to study English, and although I started off well, I quickly realised I was falling back into the same patterns. Yet again, the stress of change was getting to me. I had wonderful friends, and the most supportive and loving family you could ask for, but somehow I slipped back into the comfort and habit of hair pulling. I am now 25 years old, and haven’t managed to stop since my relapse at 19.
However being older, and maybe somewhat wiser, I now have a very different attitude towards my affliction. I have realised that this is a chronic issue, something that I will probably struggle with my entire life. The difference between my current self and the sad, scared teenager who dealt with things the first time round is that now, I won’t let this define me.
It has been a long uphill struggle to be able to talk freely about my problem, but I have been constantly surprised and overwhelmed by the huge wealth of empathy and support that’s out there. From the moment that potential romantic partners positively react to my tentative confession, to the times during the day that my wonderful colleagues throw soft foam objects at my head, when they see my hand creeping up to my scalp.
The shame aspect of trichotillomania is, despite the bald patches, the worst symptom
The shame aspect of trichotillomania is, despite the bald patches, the worst symptom. It prevents people from seeking help, it keeps them hiding their habit, and it makes it practically impossible to predict the prevalence. Studies show that 3.4% of women could have it, but in reality that percentage is probably much higher. There’s so little research in this area, and although environment is irrefutably a factor, some interesting theories on genetic causes are yet to be fully explored.
I know that in order to stop, I will have to make it a priority, and I will have to actively work to make my life less stressful. I would love to attend a CBT group, and explore other therapies. However, right now I am content pinning my hair into my now characteristic side-sweep and relishing in the love and acceptance of the people around me. I may not have a full head of hair, but at least now I, and other sufferers like Rebecca Brown, know we’re not alone.
TRICHOTILLOMANIA FAQs
Why does trichotillomania happen?
A lot of people who suffer from trichotillomania wonder how it starts. Sometimes it seems to creep up on you, other times there are significant triggers that set it off. There’s still a lot we don’t know about the condition, but certain patterns have been spotted. It’s noted that significant levels of stress or anxiety can factor in the onset, plus low levels of serotonin, as well as hitting puberty. It also tends to run in families, which means that trichotillomania could be semi-hereditary. Until more research is done, we’ll never really know the cause, or predict when someone will start exhibiting symptoms.
Is trichotillomania a form of ocd?
Most medical professionals would class trichotillomania as being a form of ocd, due to the obsessive, compulsive behaviours and rituals exhibited by the sufferer. However, another school of thought is that it’s a form of self harm, due to the quasi-violent intent of the hair pulling, plus the psychological feelings of shame and low self-esteem often associated with these behaviours.
How does trichotillomania develop?
As not many people know about trichotillomania, it can be a scary and unsettling journey to take, in terms of getting diagnosed and understanding the condition. The illness develops differently in different people: some will get worse slowly over time, while others will naturally improve with age. Common symptoms include favouring certain spots (often the crown and sides), searching for specific rough, thick or bumpy hairs and being compelled to eat the root or the hair in its entirety.
Is trichotillomania common?
Apparently there’s a 0.6% prevalence rate of people suffering from trichotillomania which means that, according to the UK’s current population, there’s at least 384,000 out there with TTM right now. Of course, the problem with this is that there will be a high number of people who are undiagnosed or unwilling to talk about the condition, so in reality this number could be much higher.
What does trichotillomania mean?
The etymology is pretty clever. ‘Trich’ comes from the Greek word ‘thrix’, which means hair. ‘Tillo’ comes from the French word ‘tillein’ which means ‘pull out’ and ‘mania’ is Latin, meaning ‘madness.’ It’s the Ronseal of medical descriptors.
Can trichotillomania cause permanent hair loss?
A lot of people worry about the trichotillomania has on hair growing back. Firstly, to anyone worried about whether it causes alopecia, don’t worry, the two conditions are completely unrelated. The baldness is rarely full and complete, it manifests more in patches. Of course, just like with waxing, consistently pulling out hair from the same patch over a course of years will change the texture and can thin it out, or stop it growing all together. It’s different for every person. As for eyebrows and eyelashes - this is also dependent on the person. Some people’s eyelashes will grow back eventually, but others won’t. Of course, there are always wigs and false eyelashes to help cover any permanent damage.
Does trichotillomania ever go away?
Trichotillomania is classed as a chronic illness, which means that many or most sufferers are at risk of relapsing at different times throughout their life, even if they manage to stop. Medical professionals and TTM survivors are adamant to challenge this assumption, however, and there are plenty of things you can do to help yourself stop pulling, even if there’s technically no cure. CBT has had a proven effect on improving the impulse and reliance on the behaviour as a self-soothing method. Exercise and meditation can help combat anxiety factors too. There are even clinics that will build you a custom-weave to give you a much needed confidence boost and provide a barrier to your favourite pulling spots. A combined approach can help many people overcome what can sometimes feel like a never-ending burden.
What to do if you have trichotillomania
If you think you might have trichotillomania, it might be good for you to go to your GP and get diagnosed so you can start finding some of the support you need. Reaching out to support groups can helpyou feel like you’re part of a community and not alone. After you’ve adjusted to your state, it might be time to think about managing the condition. Ask your GP about local CBT groups you could join, or consider some one-on-one therapy sessions. Try and limit stress in your life, and protect yourself with routines that allow for healthy eating, exercise and plenty of sleep. Surround yourself with people you love and trust and treat yourself kindly.
If you’re a long-time sufferer and looking for more options, explore the concept of custom weaves. There are plenty of clinics around the country, and they all offer something slightly different, Shop around and find one that’s right for you, but remember that these options can be pricey, and hard to get on the NHS.
Do any celebrities have trichotillomania?
Yes, more than you would think! It’s no surprise really, as lots of TTM sufferers have above average intelligence and tend to be creative. Famous names include Megan Fox - who has openly spoken about being hospitalised due to her struggles, Olivia Munn who has admitted to pulling out her eyelashes, and Justin Timberlake, who was diagnosed in 2008. Other famous pullers include Charlize Theron, who spoke about her experiences on an Australian radio show in 2012 and Katy Perry.
Follow Hannah on Twitter @hannahslapper
Picture: Molly Cranna
This article originally appeared on The Debrief.