My Sister's Secret Trich-y Life

How a sly disorder caught our family by surprise

Posted Jul 18, 2018

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by Erica Hjelle

Hjelle family
Erica and Jesse Hjelle
Source: Hjelle family

In seventh grade, my sister was almost entirely bald. I thank God every day that I can make that statement without having to associate her hair loss with a malicious disease such as cancer, or an autoimmune disease like Alopecia. But what made the bathroom floor flood with balls of thick black hair every night, what made my sister cry herself to sleep seven days a week, what made her wear a wig to school every day for two years of high school, was a cunning and sly disorder. The disorder that slipped into my sister and my family’s life so subtly went almost unnoticed at first. This disorder is trichotillomania, and it's one of a category of conditions known as body-focused repetitive behaviors (BFRBs).

By definition, trichotillomania (trich) exemplifies “a compulsive desire to pull out one's hair” (Merriam-Webster Dictionary). This includes hair on the head, eyelashes, or eyebrows. I can attest, firsthand, that the streams of tears which flowed into my room at night, and the lies my sister had to tell her friends when they asked why her hair looked so bad, did not stem from a desire she had. It stemmed from a neurological disease. This need to pull hair can be triggered by depression, anxiety, and other mood disorders, along with stress and genetics. Studies have shown that “mutations in a gene called SLITKR1 may play a role in the development of trichotillomania in some families” (WebMD, 2006). Additionally, other scientifically proven theories suggest that “a person may pull their hair out as a way of relieving stress or anxiety” (NHS Choices, 2014).

One out of every 25 people experiences trichotillomania, also called hair pulling disorder, in their lifetime, whether they know the technical name for it or not. That equates to at least one person in your biology class and one person on the bus you ride to work. Oftentimes, though, you can just look at a person, and tell that they suffer from this silent disorder. People who seem normal on the outside often suffer not only from this extreme form of hair loss but also from the guilt and pain of feeling every single strand of hair so satisfyingly slide out of their patchy scalp. What is so hard to detect from the outside, emotionally pains many on the inside.

People who suffer experience massive amounts of shame and embarrassment because, how bad can it really be? Everyone pulls out a strand of hair or two every now and then. Everyone tweezes their eyebrows just a little too much. Everyone accidentally tugs on their eyelid and has a couple of lashes fall out. Pulling an occasional hair out equates to a stress reliever like biting your nails. Quick and easy, but it does not make a huge impact on your life. But there comes a point when one strand turns to two, two to ten, ten to one hundred, and so on until there are more bald spots than hair on your head. And you begin to distance yourself from everyone; friends and family no longer truly understand what you are suffering. You do not want to show your face in public due to fear of being made fun of for wearing a wig or having bald spots. And then the fear and anger turns to sadness, which turns to depression, and you find yourself in a deep pit of darkness, unable to climb yourself to help.

So how do you manage to trudge your way out of that hole? People are desperate to try anything to reduce their urge. Standard methods like therapy and antidepressant medications benefit some chronic pullers. But when these traditional methods fail, people suffering from trich resort to any options that have been recommended to them. This could possibly include such extreme acts as resorting to marijuana use and cutting sugar out of their diet. But, like any disorder, these methods are not guaranteed to work. Even today, many sufferers continue to hide behind their disorder in guilt and embarrassment.

These days, my sister is in college. She is more open about having trich, which we now understanding is one of a category of conditions known as body-focused repetitive behaviors or BFRBs. With support and therapy, my sister has found that her urges are more under control - although sometimes they flare up.

Awareness needs to be brought to trichotillomania because people should no longer feel humiliated about their disorder. Trichotillomania does not cross most people’s minds when thinking of mental disorders. In fact, most people do not know what it means to have trich unless it has affected them personally. Oftentimes, once people do discover trichotillomania, they do not fully comprehend the mental and social effects it can cast on someone. There is a stigma present in society, that trichotillomania does not deserve to be taken seriously. Often, people are judged by others for having “bad” hair, or are seen as over dramatic for believing there is actually a disease for hair pulling. This needs to change. Trichotillomania affects the lives of thousands, and the families of many more. People who suffer so silently do not deserve to live in shame and hiding. They deserve help.

They deserve recognition.

They deserve acceptance.

 Hjelle family
Erica Hjelle
Source: Hjelle family

 Erica Hjelle is a high school senior.

References

"Hair Pulling Disorder Tied to Genes." WebMD, 27 Sept. 2006, www.webmd.com/mental-health/news/20060927/hair-pulling-disorder-tied-to-genes. Accessed 5 Nov. 2017

Merriam-Webster Dictionary. Merriam Webster. Merriam-Webster, Merriam Webster, www.merriam-webster.com/dictionary/trichotillomania. Accessed 5 Nov. 2017.

"Trichotillomania." NHS Choices, Crown Copyright, 19 Nov. 2014, www.nhs.uk/Conditions/trichotillomania/Pages/causes.aspx. Accessed 5 Nov. 2017.

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