23/10/2017 3:24 PM AEDT | Updated 23/10/2017 3:24 PM AEDT

What It's Like To Live With The Uncontrollable Urge To Pull Your Hair Out

It's called Trichotillomania, and it's as hard to spell as it is to talk about.

Veronique DURRUTY via Getty Images

I'm sitting on the couch watching a movie with the parents. It's a typical day in our house. My concentration should be on the movie but my mind wanders to other things. My hand starts to make its way to my scalp, to all the different strands of hair. I know I shouldn't and I know it's wrong but I can't seem to help myself. I covertly glance over at my parents to make sure they don't see my habit, my secret.

Why do some people pull their hair out?

I suffer from a condition known as Trichotillomania. Basically what it means is that I have an uncontrollable urge to pull my hair out. It started as a weird habit, I didn't even realise I was doing it. When I do realise I'm pulling I immediately put my hand down but the compulsion is there. My hand and mind want to go back and finish what it started, to finish the urge. It's something I'm going to have to live with for the rest of my life.

Even as I'm writing this I can feel myself getting emotional. It's hard and scary to put something I kept hidden into words for people to read.

Trichotillomania sufferers are more commonly women than men. Studies show that 80 percent of people who are affected with this condition develop it between the ages of six and 18, and it can last for at least 20 years.

Even though around 920,000 Australians suffer from this disorder, Trichotillomania remains to be unknown and misunderstood. Mostly due to the fact that people who do have Trich do not want people to know. Not even doctors or psychologists.

With two to four percent of the population experiencing the disorder, it makes it at least as common as schizophrenia. Hairs with unique textures or qualities may be preferred. The pulling may include rituals like twirling hair off or examining the root.

What is the cause of hair pulling?

PhD candidates Imogen Rehm, psychologist at Swinburne University of Technology, and Reneta Slikboer, researcher of Trichotillomania at the same institution, have written a few articles throughout the years explaining what Trich is.

The condition has been considered a habit for quite a long time. Now, however, we know that it is much more complex and distressing. Rehm and Slikboer think that there a more biological, psychological and social factors in determining who gets the condition and who doesn't. Evidence has also shown that there is a strong genetic component to it, though there is no indication of a specific gene being responsible.

Reports from various people who suffer from the hair pulling say that it starts with an intense urge to pull and then they cannot stop, even if they want to. Typically, when you pull hair out you feel pain. People with Trichotillomania tend to experience more relief or pleasure than pain. Researchers have shown that the hair pulling can help people to feel in control or avoid experiencing negative emotions.

For a long time I didn't know what was going on, or why I was doing what I was doing. Honestly, I thought I had become a total freak. Who pulls out their own hair? It was a shameful, horrible secret that I kept to myself for eight years. I knew years ago that it was more than some weird thing I did, but I did nothing about it. Denial is a wonderful but cruel mistress.

I hated walking in front of mirrors or anything that had a surface. I hated my reflection because I could see what the condition had done to my hair. My beautiful hair that was once long and luscious, thick and bouncy. Now a straggly, thin wisp that I'm lucky if it hides the bald spots starting to appear.

This, of course, led to feelings like despair, self-esteem issues and lack of confidence. It got to a point where I didn't even want to leave the house in case people detected. How could they not realise? I noticed therefore, it could be spotted by everyone. It can make you paranoid.

I finally came out to my family and friends last year and it was one of the hardest things I have ever had to do. I was waiting for their disgust and horror at what I was doing to myself, but the only one that was disgusted and horrified was me.

​​​​​​​How do you stop pulling your hair out?

There have been reports of various successful treatments for Trichotillomania, however, it seems to be different for everyone. Research has shown that psychological treatments seem to be more effective. However, exactly how the psychological therapy helps reduce the condition is still misunderstood.

Awareness of Trichotillomania is starting to grow in Australia, which means there are a lot more support systems in place. The Anxiety Recovery Centre of Victoria now run monthly support groups in Melbourne, Adelaide, Brisbane and Perth.

Still, there are still great limits to the knowledge of Trichotillomania. Given how common it is, it's under-researched, under-recognised, under-treated and misunderstood. Nail-biting, skin-picking and thumb-sucking are considered to be related conditions, says the Gale Encyclopedia of Mental Disorders.

This is my coming out story, as hard as it is to put the words to page, I hope people will read it and want to learn more. Or perhaps it will help someone with Trichotillomania to feel less alone.