10 Things I Wish Everyone Knew About Trichotillomania
Trichotillomania (TTM) is a body-focused repetitive behavior (BFRB) characterized by compulsive hair pulling, resulting in noticeable hair loss and distress. This disorder affects an estimated one in every 25 people yet struggles with gaining significant awareness. TTM causes a great deal of shame, which makes it difficult for people to come forward.
At 7 years old I was diagnosed with TTM. I have been in an ongoing battle with this disorder for nearly 14 years now. I have also been closely involved with the TLC Foundation for Body-Focused Repetitive Behaviors during these years. After becoming an advocate for TTM last October, I have been faced with many questions from friends, family and other sufferers. There are certain aspects of this disorder I believe are extremely important for the public to know.
1. We can’t “just stop.”
If we could, we would. I promise.
2. This is a real psychological disorder.
I often get asked if this is a habit or an addiction. It’s not. TTM is categorized in the DSM-5 as an Obsessive-Compulsive Disorder (OCD) related behavior. This does not, however, mean that TTM is OCD. This is a common misconception. TTM and other BFRBs are simply on the OCD spectrum, as this is currently the most appropriate place for them in terms of diagnosis.
3. We don’t want this.
People seem to forget this. We don’t want to engage in the behavior, nor do we want the hair loss or shame that results from it. The only thing we do want is the feeling of relief from tension and anxiety that causes us to pull in the first place. When a hair is pulled, endorphins are released in the brain. This creates an instant feeling of relief. You may have heard about endorphins before — they are released when you exercise as well!
4. We are extremely self-conscious about our appearance.
As you probably guessed, unwanted bald spots (or total baldness) creates a great deal of emotional anguish. We spend hours every single day doing our hair – it’s both frustrating and nerve-wracking. Even when we’re sure our spots are covered, we still constantly worry about them being discovered.
5. We don’t expect you to understand.
It is absolutely impossible for someone who does not have TTM to understand someone who does. No matter how frustrating it is, you will never be able to feel what we feel (unless by some chance you develop TTM, which I whole-heartedly hope you don’t). That being said, we don’t need you to understand. We just need you to support us during this battle. Unconditional love, encouragement and positivity can make a tremendous difference… and we appreciate it more than you’ll ever know.
6. Sometimes, we just need space.
It gets tiring to live in a society where the importance of hair is so over exaggerated. Not only is the point of having hair put in our faces constantly, but specifically the idea of perfect hair: imagine all of the hair product commercials you see or the fuss over how celebrities do their hair. Seeing someone with silky, luscious locks can send us into a depressive frenzy. So yes, sometimes we get irritable and upset. We just need some time to breathe.
7. Many of us suffer from other mental health issues as well.
It is not uncommon for those with TTM to have co-occurring disorders, such as anxiety and depression. Research has not yet identified whether other disorders trigger the onset of TTM or if TTM leads to the development of other disorders.
8. Recovery is possible.
Take it from me: I have recovered twice. Unfortunately though, TTM is much like a roller coaster. There will be times in life where your pulling is nonstop and times when it is stagnant. But it is in fact possible to stop. The most important thing is to never give up.
9. There is no known cure.
Until recently, doctors did not take the issue of TTM and other BFRBs seriously. It was assumed an insignificant amount of the population struggled with these disorders, when in reality, it simply took time to get people to realize they weren’t the only ones – which led to the creation of a community dedicated to raising awareness. Now, it is estimated that 4 percent of the population is affected by these behaviors. For the first time, large-scale research is in the works. However, for the time being, millions of others and myself are facing this issue every day without a cure.
10. You can help.
The largest barrier between us and a cure is funding. This research costs an astonishing amount of money. We need your help. To learn more about current research and making a donation, please visit here.
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