How one UofGH alumna got Canada talking
When Sarah Robertson tells her story, she includes a lot of shoulder shrugging and looks of surprise and statements like, I was in the right place at the right time to start something… I guess. Even she didn’t realize the impact she was having, and may not yet still.
Her story begins in the seventh grade.
“I didn’t initially know what was going on. Two months later, I had to wear a bandana to cover up what I had done.”
Sarah suffers from a rare disorder called trichotillomania, or “trich” for short; a type of anxiety disorder that causes people to pull out their hair. If you haven’t heard of it, that wouldn’t surprise Sarah: “My mom took me to the doctor when she saw bald spots on my head. He diagnosed me with trichotillomania, which I’d never heard of.”
This statement, now, at the core of her mission.
“I want people to know about these conditions; to learn about them. I’m hoping to reduce stigma. It’s a legitimate medical condition,” she confirms.
But things weren’t so clear in the seventh grade. “It was something that was making me feel good,” she pauses, “but also ashamed. I was teased. It was horrible. It was very strange to me.”
“I didn’t know what type of kid I was, but I knew I didn’t want anyone else to deal with doctors or hospitals in the same way I did.”
Sarah was put on antidepressants and referred to a child psychiatrist. “I knew I was pulling my hair, but why was I talking with someone about my relationship with my sister? It didn’t make sense to me.”
She says it wasn’t helping. In fact, she believes it was making things worse. She describes how increased doses of medication affected her behaviour; how it made her agitated and argumentative. She ended up in a psychiatric ward in hospital.
“I realized that night I had an issue. I was in a mental health ward,” she emphasizes, eyes wide. “It was locked. I couldn’t leave. I couldn’t have shoelaces.”
The experience left her angry with the mental health system, with her doctors, with her psychiatrist. So she decided to tackle whatever this was on her own – without medication, without doctors – and got out her computer.
“I typed, I pull my hair out.”
She found one website. A centre in Santa Cruz, California, devoted specifically to hair pulling, called Trichotillomania Learning Center (TLC).
“And I thought, there are enough of us out there [to justify] an entire organization? I thought I was the only one.”
Sarah isn’t sure what drove her to stop pulling, but her pull-free countdown strategy seemed to work.
“I put a #1 for one day, pull-free.”
For the next year and a half, Sarah was pull-free. By the tenth grade, she had her hair back, along with her self-confidence.
“I started to find out who I was. I was interested in being a leader.”
“I still wanted to help others like me. That’s when I decided to go into social services.”
She describes her time in Family & Community Social Services at the University of Guelph-Humber as life changing: “We connected not just as professors and students but as people with a cause.”
She adds: “At UofGH, I was Sarah. And everybody knew who Sarah was.”
“It wasn’t just about learning the laws or the terms or the skills; it was about taking our passions and figuring out what to do with them – and how to do it.”
“I wanted to talk about things nobody else wanted to talk about.”
But she wouldn’t be doing that just yet. Her father passed away while in her third year at UofGH; Sarah relapsed.
She admits to not dealing well with the sudden death of her father. She took time off after graduation in 2011, and found herself dealing once again with the mental health system.
“I was staying in bed 24/7, for at least six months.”
Sarah was diagnosed with severe depression, but this time was able to find a medication that seemed to help. Still, the hair pulling overtook her life.
“I was having to wear hats. Again.”
She found herself once again at her computer. And, again, found only TLC – that same organization from when she was a teenager. But this time she contacted them.
“I explained my education, the placement experiences I’d had while at UofGH, my background -- and they gave me an opportunity to run a table at an upcoming conference about obsessive compulsive and related disorders (OCD) at Sunnybrook Hospital in Toronto on their behalf.”
She looks stunned as she recalls the conversation.
“I wasn’t thinking anything would come of it.” Then adds: “But it was clear to me that we needed an organization like TLC in Canada.”
TLC had also suggested she contact local doctors in the field. She found one in Canada, based in Toronto: Dr. Peggy Richter, director of Sunnybrook’s Clinic for OCD and Related Disorders.
***
The conference was in March.
By then, Sarah had started a Facebook page to reach out to others in Toronto. She desperately wanted to start a support group; to meet other people, and to be able to talk openly about the disorder. She’d started a blog about her experiences, and invited guest bloggers to include theirs. Facebook numbers grew steadily. But not only with people from Toronto; people from across Canada began reaching out to Sarah through her group.
To continue to get the word out, she designed a logo, named her group, printed a poster and some brochures. A friend of hers suggested she create business cards.
“So I created business cards. Which seemed odd, since I didn’t own a business.”
The night before the conference, Sarah gathered TLC’s pamphlets, along with her own business cards and handouts.
“I was really nervous heading to the conference – funny, since it was a conference on anxiety.”
But Sarah was feeling more surprised and perhaps a little foolish by the end of the day.
The conference turned out to be one marking Canada’s largest-ever private donation focused on OCD research and treatment. The $10-million gift was used to create the Frederick W. Thompson Anxiety Disorders Centre within Sunnybrook’s Brain Sciences Program, for which Dr. Richter is now head. Dr. Richter stated in a news release: “This gift makes a bold statement and represents a real turning point in the research and treatment of anxiety disorders.”
Sarah now laughs looking back on that day; not having realized the significance of the conference, nor the significance of Dr. Peggy Richter (whom Sarah didn’t realize was the same “Peggy”), nor the significance of her own work.
“Peggy was giving her slideshow presentation – and my Facebook page was up there! Included in her slideshow! She made me wave from the back to all the medical professionals!”
At the end of the conference, Dr. Richter requested an appointment with Sarah.
“I googled her, of course, once I got home.”
She shakes her head. “I felt like such an idiot.”
***
The meeting lasted 20 minutes.
“It was really quick. But Peggy seemed really excited that someone in Canada had taken this on… and so we decided to try to run a Canadian organization. Somehow. Someway.”
Sarah pauses on the word Canadian. “I never dreamt of doing something this big. I would have been happy with a support group. What 23-year-old is going to start their own national agency?”
Sarah says she had an idea of what was involved in starting an agency because of a course she’d taken while at UofGH. A few of her old professors helped her to get started.
“I still refer to my textbooks. There’s a checklist in the back that I used. I’m not joking. Although now I do think I should have paid more attention in class.”
Sarah founded the Canadian Body-Focused Repetitive Behaviours Support Network (CBSN); it focuses on trichotillomania and other related disorders, such as skin picking. A few weeks ago, it was made an official agency under Canada’s Not-for-profit Corporations Act – now the second agency in the world dedicated to body-focused repetitive behaviours and related mental health disorders.
"This is what we've been waiting for. A Canadian agency, built by Canadians, for Canadians, who suffer from these conditions. I hope to open an office by next year. From there? Who knows."
“I know my mom is super proud.”
She talks with ease and excitement about one day becoming the agency’s executive director.
“I want this organization to be what I didn’t have.”
But for now, Sarah says just hearing from people who want to come out is the ultimate reward.
“There are so many people [who have contacted me] who are hiding.”
While there haven’t been enough prevalence studies to produce definitive numbers, estimates show that one to four per cent of the population may have the disorder. Hair pulling and related skin picking disorders have recently garnered attention in their re-classification: formerly under OCD, they’ve been re-classified as distinct entities in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, or DSM-5.
“Hair pulling is a legitimate medical condition. It’s not uncommon. And now – it’s not unheard of.”