If You Struggle With Trichotillomania, You're Not Alone

Trichotillomania. It’s a big word, pronounced trik-o-til-o-may-nee-uh and literally translates to “hair pulling madness,” which in my opinion is pretty suiting as it kind of sums up the experience. Trichotillomania is the irresistible urge to pull out your hair, whether it be from the scalp, eyebrow, eyelashes, or body hair. Sometimes the pulling is conscious, and sometimes you don’t even know you’re doing it: your body takes over, running riot through ever-decreasing strands of hair.

The thing I can most liken trichotillomania to and make it more understandable to people who don’t struggle with it is having a pacifier as a baby or people having a comforter teddy or sucking their thumb. It’s self-regulating and self-soothing, both of which can be very powerful influencers over our emotions and behavior.

Trichotillomania is classed as a form of obsessive-compulsive disorder in the DSM and is categorized under body focused repetitive behavior (BFRB) which also includes skin picking, nail biting, lip biting and things alike. I find there isn’t much of an active thought process behind this disorder, which makes some people question what category it should fall under. Many people with trichotillomania also struggle with other mental illnesses, most commonly including OCD, anxiety, and PTSD. This isn’t the case for everyone, people will often disregard trichotillomania as a bad habit, but to those of us who struggle, it is incredibly frustrating when it gets minimized down to this.

For many people, trichotillomania develops in childhood or teenage years but alike all other illnesses and disorders, it can also occur at any age, for any reason and no one decides to have trichotillomania. You don’t just wake up one day and think to yourself “I know, today I’m going to pull my hair out.”

For me, it was a gradual thing, and I don’t know exactly what started off this, or even what I was doing for years. I think it was the age of 12 (I’m now 19) when I started to sit and search the ends of my hair for split ends, pull them apart or break the bottom bit of that strand off. This somehow progressed to pulling out the entire strand from the root and overtime has spiraled and for the past two to three years has been pulling significant clumps of hair at a time, and as a result I’ve lost probably half of my hair including the entire top of my head.

Despite what people may think, or what you’d expect to hear, pulling my hair doesn’t hurt. If it has been particularly bad, then a few hours later or the next day my head may ache and feel sore to the touch but the actual process of it is soothing rather than painful. There are some areas that are naturally more sensitive than others, but these are the places people, including me, tend not to pull from. People with trichotillomania tend to pull from one area which can change or stay the same. I have never pulled from anywhere except from my scalp. Textures may sometimes play a role in pulling, some people may pull until they find the “right” hair, one that is thicker than others or you just feel satisfied when it is pulled and for others like me, it doesn’t matter, I just pull wherever my hands go to on my head. I do however have a fascination with inspecting the follicles of each hair, running them through my fingers. I know I’m not the only one who does this, and I don’t know what the enthrallment of it is, but it does serve some kind of purpose.

What people don’t see is the huge toll trichotillomania takes on not only your self-esteem and confidence, but also your environment. Rogue hairs feel like they coat every surface and inch of your body, you feel so ashamed about your lack of hair/eyebrows/lashes, having endless supplies of fake lashes or brow pencils, trying to cover bald spots up or style things in a way that hides your patches, wearing hoods, hats, wigs or bandanas no matter the weather, not letting anyone see the real you, the vulnerable you, the “ugly” you. I get it, people gasp at the sight of someone who doesn’t necessarily live up to societal standards or who looks out of place. Personally, I feel so ashamed of my hair that I don’t let many people see it.

I am just as baffled as anyone else as to why this disorder exists, why people have to struggle with it and how it makes any logical sense. But somehow it does. And it is something that can’t be just snapped out of and isn’t easily understood by someone who hasn’t struggled with this disorder.

As with any illness, I do believe that recovery is possible. I think it’s hard and I think it’s a very long process and is something that can maybe never truly go away. The term recovery is subjective and means different things to each person, and it’s up to them how they define their journey, but I do believe a huge part of it is acceptance. Acceptance of yourself and your body, knowing your disorder doesn’t define you, your worth or your capability.

If you’re reading this and you struggle with trichotillomania, know you’re not alone. Before I was diagnosed, I felt so ashamed of what I was doing and how I looked. I believed I was the only person who did this, and I never saw anyone else with missing hair in the way mine was. With help from my therapist and one of my nurses, as I did research, joined some Facebook groups and started to follow some people on Instagram who also struggled, I discovered that so many others were going through an experience similar to mine. It made the world of a difference in just knowing I could be understood. I encourage you to do the same. I hope one day you will be free from trichotillomania: your “flaws” will become someone else’s perfections. You are enough as you are, and your hair (or lack of) does not define you.

If you know someone with trichotillomania or are here because you want to learn (or just randomly stumbled upon this because you were intrigued by such a big and abnormal word!) then thank you, thank you for wanting to learn and educate yourself, it means so much to all of us with BFRB and makes us feel seen, cared about and enough. Be kind, remember you’re enough.