With being home from the TLC conference for 3 days, I am still experiencing a rush of life that cannot be achieved elsewhere. For sufferers like us, we NEED the social support of peers who understand our exact struggles without even speaking a word. If there is anything a sufferer of Trichotillomania or Dermatillomania needs to do in their life, it’s to attend one of these conferences, even if it means saving up scraps of money for years… it’s worth it. No monetary value can be placed on the enriching life-long memorable experience you gain from having a true connection with those who know your exact pain.
After accidentally bringing my expired passport to the airport on April 18th, to having a cancelled flight the next day, to many more delays the same day, I arrived at the Renaissance Newark Hotel in Elizabeth, NJ, panicky from missing all of the nights events and hungry without the ability to seek out food due to my flared-up back from an incident 6 months ago. On the shuttle to the hotel, a woman was sitting beside me and with me being aware of Trichotillomania, I thought that she may be wearing a wig… so I eased my way into asking her if she was going to the conference. She was a fellow Canadian who went out of her way to help me with my bags into the hotel in lieu of personnel not rushing to assist me with my mobility issue.
After being mentally disheveled from my travels, a dear friend who I met at the conference two years ago immediately came up to my room and we had a fun night of eating pizza (ordering online… I didn’t know it could be done, even back home!) and catching up! These two instances are the raw examples of the hospitality and immediate magic you experience when you attend a TLC conference. Compassion, love, connection, support, and the openness to be yourself. Although I am not religious and do not believe in God, there is something indescribable that happens at these events that is out of my power to truly comprehend.
The TLC conference is also an event where you learn about advances in research, coping mechanisms, and bettering your life on a whole mental scale. There are a ton of workshops to choose from for sufferers, support persons/ caregivers, parents, children, and even professionals. They are split up into personal growth, evidence-based treatment, and scientific research. Both of the workshops I created and facilitated were personal growth, but one was for children while the other was strictly for adults. This was an especially challenging transition to make, but I felt that I completely rocked both workshops.
With the children, Christina Pearson warned me that there were a lot of energetic children she had finished working with earlier, so I scurried to the main area to ask for more volunteers with my Tickets to Happiness workshop. There wasn’t anyone else available so I worried that with my lack of mobility, it would be especially challenging to keep them stimulated. Out of the hour and fifteen minute workshop I kept them busy for a full hour- that’s hard to do for children between the ages of 7 and 12! It boosted my confidence as a Child & Youth Care worker (despite no longer being qualified in my province to be one!) and hearing some of them speaking about being isolated in school and not being understood by teachers broke my heart. The trick to working with around 20 children with an isolating disorder is to treat it as a behavior that we can tackle together, to empower them to overcome but also remind them that it’s not “bad” to give into the urge- it just means that we can learn and try something else next time.
I then attended a panel, on TLC Executive Director Jennifer Raikes’ request, about love and relationships that was being filmed for the Trichster documentary. As someone who remembers what it’s like to be filmed 2 years ago at the conference in San Francisco, I know about a lot of the hardships throughout the process and wanted to contribute as much as I could to assist them. People spoke about “coming out” to a partner and most of the stories resulted in acceptance! Many of us fear coming out to a partner, or even getting close to someone romantically if we cannot hide our disorder, when in reality, many people are accepting of us! Dana Marie Flores, a TLC board member who has been open about her struggles with Dermatillomania, facilitated the filmed workshop and I strongly admired her eloquent leadership abilities in speaking about Trichotillomania and Dermatillomania. She had just come from a teen workshop about dating and relationships and she had been doing this for a few years now; with her age and experience, I became nervous about my workshop that followed right after the filming because Dana set a high standard for a personal growth workshop.
My nerves were so rattled that I sped out of the room as fast as possible halfway through the filming because my stomach reacted, as it usually does with stress; but when it came down to it, I believe I delivered with my workshop. The first 10 minutes were shaky as I was also being filmed with Trichster star, Rebecca (viral YouTube artist!), and I had to speak on the topic of Fearing Intimacy. Recognizing that I am a 26 year old in a leadership role, speaking about relationships and intimacy when some people in the room have been married longer than I’ve been alive, had its particular challenges and I made sure to respect that life experience as it’s one I haven’t reached yet. As a group, we talked about intimacy as equating to trust and instances it has been broken by coming out to someone in a position of power (doctor, teacher, employer, etc) along with those we are equal to in stature (friends, family). Slowly we transitioned into physical issues such as hugging, then into sexual intimacy (self-esteem, being pleasured, combining emotional trust and physical closeness). After the workshop, a woman approached me looking in shock as she stumbled on her words, telling me that my workshop was so powerful and amazing! She truly looked in awe which helped confirm that this workshop, which went over the time limit by 10 minutes, was a success! Another woman told me that she has never opened up about her 12 year marriage struggles and that I made the workshop classy and safe to speak out about it.
I then had a bit of a break and didn’t attend the fancy supper downstairs due to my stomach acting up and how anxious I get at elaborate dinners, so I took a nap in my room and prepared for the premiere of Scars of Shame. Lisa and Jennifer Raikes introduced the documentary after the dinner clean up and the minute the documentary started I could feel the panic rush of, “What did I get myself into??? Here I am sitting silently watching over 70 people see MY life!” Looking around, I saw tears in people eyes, even from the woman who helped me with my bags the night before who has Trichotillomania! Although I have watched it myself 3 times now, I couldn’t help but shed some tears during the part of the film that talked about how close I was to my father before he had his brain injury- the emotional energy just caused sad moments to not be repressed because I let myself be emotionally vulnerable all weekend in order to truly soak up the essence of a TLC conference. Jen was so supportive and comforting by rubbing my back every once in awhile, picking up on my anxiety when normally I hide it well. Mrs. North Carolina 2013, Josie Sanctis, attended the viewing and she is a really amazing woman! Her pageant platform is Trichotillomania for personal reasons and it didn’t stop her from being crowned this year and she’s going straight for Mrs. America this August. A very down-to-earth and gorgeous lady who has my 100% support!
I was asked to speak after the airing with an “Angie, Angie” chant started by my lovely pizza partner and I was pretty speechless, fumbling with the mic and my legs felt weak! I didn’t know what to say because I didn’t know the audience’s ratings of the film and people wanted me to talk about it, so I gave a haphazard speech… but definitely for good reason! MANY people came up to me after the viewing, completely moved by what they had just seen. Some told me that they came to the conference because they knew they would meet me, or they wanted to see the documentary for the first time, or they went after hearing about it from my past internet “advertising” of it. With many of the viewers being skin pickers, they said that seeing me on my bathroom counter picking really made the disorder real to them… of seeing that they aren’t alone. They want to see this documentary go worldwide, they believe that this film will be the door-opener for awareness for us and I couldn’t agree more with them!
The final day of the conference held the Success Story speeches, which I was honored to be a part of with 3 other women who have defined success from either conquering their Trichotillomania or have grown from being open with lessening the severity of their disorder. My speech was one about self-acceptance being the key factor behind living a happy life, not being cured. “if a cure or successful behavioural modification came out, it would only be an added bonus to my life…”. This was also being filmed by Trichster, along with a 10 minute private booth session I had the chance to take part in the day before. After the 4 speeches were done, a few people came up to quickly share their words of wisdom which included this little girl who pulls her hair (maybe 4 years old?) and I swear, her speech had a profound undertone in it that we can all take away from the conference; she was matter-of-factly about her methods of trying not to pull not working, showing us that most of the battle comes from the stigma that others place on us… one she has not had to endure at such a young age.
I was alone in the hotel while most other guests checked out to go home or visit New York, but I was stuck due to my back problems. A young woman who I had seen around came up to talk to me and it turned into a few hours of chatting plus dinner, saying it was a thank you for saving her life. It meant so much to me to see what this advocacy is doing for people because I don’t see it from my little apartment in Nova Scotia. Her story, her suffering, her strength and seeing her growth is a reason I put my story out there. This is what I am meant to do.
Thank you to EVERYONE who added to my experience at the conference this year. It was much different from my last attendance since I was feverishly working on the documentary without getting the chance to really delve into it. I’m still feeling the rush of being there and don’t even want to unpack my bags because it would confirm that I don’t get to see these amazing friends for at least another year and I want to hold onto this feeling of love, warmth, and support. If you are a skin picker or hair puller, PLEASE attend at least once in your lifetime. I can guarantee that your life will become more fulfilled because this is an experience you cannot get anywhere else. I hope to meet you and see everyone I met again, in the near future.