When I was around 17 years old I had my first relapse with trichotillomania. Prior to that, I felt pretty in control of my hair pulling. Yes, I still did it but not to the same frequency that once caused me to have no eyebrows or eyelashes and a big bald spot on my scalp. That feeling of being in control didn't last long.
When I noticed the frequency of my pulling started to increase again I leaned on my parents for support. I wanted to try anything and everything! I didn't want this disorder to take my confidence away again—I had just gotten it back! So my parents set up a psychiatry appointment.
I talk about this in my memoir, The Trichster Diaries, specifically in the chapter titled, "Pill Popper"
I ended up being on multiple medications of varying doses. I wanted to try medication but something felt wrong to me as I swallowed different pills in the morning and again at night. Why hadn't I seen any improvement? Why did we keep changing the dosages and adding more medications? Something wasn't right.
After about a year, give or take, I decided to wean off of everything—and that was a process in and of itself. I had noticed no positive change in my pulling. From that moment, I knew I would never try medication to treat my trichotillomania again.
Fast forward 16 years...
I'm attending my first TLC BFRB Conference in Washington, D.C. and I see that there is a presentation titled, "The role medications can play regarding diminishing the severity and impact of various repetitive behavior conditions" that is to be given by an esteemed psychiatrist and member of TLC's scientific advisor board. Because of my personal choice to never use medication to treat my trichotillomania, I wanted to see what the latest research was showing and if it would open my mind.
The presenter began by sharing that he believed trichotillomania is not a stand-alone disorder and that the only way to treat it is by treating all of the comorbidities the patient has. As someone with trichotillomania without any other comorbid disorders, I was taken aback but I could understand that my experience is uncommon. The presenter did mention that only about 10% of people with trichotillomania had what he considered "pure" trichotillomania.
Then came the case studies:
#1: 15 years old on 4+ medications
#2: 23 years old on 1 medication but dosage would need to be increased over lifetime
#3: 21 years old on 5+ medications
The medications he showed were the same medications I was on as a teenager 16 years ago. WHAT?
I felt like I was sitting in that psychiatrist's office all those years ago. I was stunned and furious at the same time. I looked around the room to see if anyone was having a similar reaction and what I saw instead was excitement from other medical/mental health professionals. Why? Because the people in this presentation were people who did not have trichotillomania—they treated people who did. They didn't have the lived experience that I had. I wanted to scream.
I couldn't imagine how someone could look at the case studies he showed and think, Putting a teenager on multiple medications is a great idea! Having someone on medication for the rest of their life is a great idea!
And here's the thing: The people from the case studies weren't cured. They continued to do the behavior while taking all of that medication.
The presenter even said that patients need to be willing to try new things because it was a lot of trial and error. Trial and error with our brain chemistry? Everyone nodded in agreement. I was frozen.
I left the presentation feeling dejected. How could they still be using the same medications? Why hasn't anything changed? Are they listening to us? I guess not.
I want to make it clear that I do not carry any ill will toward the presenter. I know he is doing what he feels is best but I wish it wasn't medication after medication after medication. I'm sure he has helped tons of people! I just know that from what he shared with me he wouldn't have helped me.
I also know firsthand that there are other ways to treat your trichotillomania without taking multiple medications that could permanently alter your brain chemistry. There might not have been before but there are now. Let's try those options first! Please!
My journey and my opinion are just that: MINE. If you feel medication would help you, take it! Always do what you feel is best for you. I hope that in sharing my experience that you feel empowered to try all of the options at your disposal and not feel pressure to jump right to medication.
Thank you for sharing this! My daughter developed trich a year ago and your posts have been such a comfort. A psychiatrist felt her disorder may be associated with OCD and wanted to prescribe prozac, but then admitted it likely wouldn't help with the trich, and would mean a lifetime of medication. It's so worrying how quickly meds are prescribed to young kids, it's everyone's choice whether to medicate, but so important to hear stories like yours, too.