Coming forward, one after the other, with nervous smiles and crimson cheeks; scattered patches and funky hats, big hair, no hair, marked skin, pocked cheeks. All worn like warrior marks to courage up the language to testify to the triumph of this weekend’s gathering.
These brave hearts briefly noted their cities of origin and sentimentally began to weave the colors in the tapestry of their new tribe.
The Trichsters- the pullers and pickers, the once isolated, often bullied, scarred voices boomed into the microphone stories of windowpane transparency, leaving a shattered history on one side and break- through’s to connection on the other.
The collected pieces of “I do that too” stitched over each other like lucid love letters highlighting haircuts, healing and pull-free victories. Giving hugs and holy thanks to parents-many of whom they’d seen change in just a few days, and many more they knew still had work to do- as did they. And these parents, present to unfolding possibility, sat at tables holding hands with teary eyes watching the transformations of their once seemingly chrysalis children blooming into pretty-winged butterflies.
And this time these beloveds were not alone. Their “First Time Attendee” pale blue ribbons no longer a symbol of being a beginner, rather a stamp that their tribe had valiantly spoken and “welcome” was their decree.
Their elders- the millennials; those who had been in attendance twice, five times, ten maybe- raised the arras of their design and waved a bold and brilliant flag of acceptance and love. Aware that they were held in a room of like smiles and similar trials, their parting goodbyes were met with memories and bittersweet ‘til next time’s.
Submitted by Eshe Raki
Dr. Darin Dougherty is a member of TLC’s Scientific Advisory Board and a key player in TLC’s exciting research initiative – the BFRB Precision Medicine Initiative (BPM). Darin is the Director of the Neurotherapeutics Division in the Department of Psychiatry at MGH, the Director of the Mood Disorders Section of the Massachusetts General Hospital Psychiatric Neuroimaging Group, and the Associate Director of the Massachusetts General Hospital Psychiatric Neuroimaging Group. He is also the Director of Medical Education at the Massachusetts General Hospital Obsessive-Compulsive Disorder Institute and the Co-Director of the Massachusetts General Hospital Trichotillomania Clinic. Additionally, Dr. Dougherty is an Associate Professor of Psychiatry at Harvard Medical School, a Clinical Associate at Massachusetts General Hospital and a Visiting Scientist at Massachusetts Institute of Technology.
Here, Darin shares some insight into his work with the SAB and thoughts on the TLC Conference. Special thanks once again to TLC Member, Jackie McNamara for another great interview!
1. Please briefly describe your involvement with TLC’s BFRB Precision Medicine (BPM) Initiative.
I have been involved in the BPM Initiative since its inception. The TLC’s Scientific Advisory Board (SAB) realized that a large, comprehensive, combined focus of study was needed, rather than continuing the multiple-small-studies model that BFRB research has historically depended upon. Make no mistake, these smaller studies have been heroic efforts conducted by researchers passionate about BFRBs on shoestring budgets. However, the SAB felt the time was ripe for a large, adequately funded, nationwide BFRB research project. The exploding growth of precision medicine for improving outcomes for illnesses across all medical specialties was the impetus: We need to get BFRB research on the precision-medicine track. Only now, with the BPM Initiative in place, do we feel it is appropriate–and necessary and urgent–to ask for the larger resources needed to move beyond the model of the past.
2. What has been the most significant finding in your research thus far?
I completed a four-year residency in psychiatry after medical school, followed by a two-year fellowship in neuroimaging. My research focus as a physician-scientist has always been translational work between more basic scientific studies (often utilizing neuroimaging) and clinical research. My neuroimaging research has helped to explain the neurobiological abnormalities underlying multiple psychiatric illnesses in order to better refine our treatments. With my clinical background, I am also able to conduct clinical trials of these new treatments. My goal is to do truly translational work.
3. Tell us a little bit about the workshops you will be presenting and what you hope attendees will take away from each.
Given my interest in the neurobiological abnormalities underlying psychiatric illnesses, I will be presenting an overview of what we know about the underlying neurobiology of BFRBs. I hope that attendees come away recognizing two things: First, that we really have accomplished a lot to further our understanding of the neurobiology of BFRBs with the limited resources we’ve had; and second, there’s much more we need to learn and we have the promise of modern research techniques to get us where we need to go.
In addition, because I am a clinician who treats people with BFRBs, I will participate in a Q & A session about treatments for patients and their families. I simply hope that I am able to help the audience learn as much as they can regarding treatment options. The Q & A is always a gratifying session for me.
4. What is one message you would like to get across to individuals with BFRBs (and/or their loved ones)?
The most important thing is that individuals with BFRBs are not alone. Simply being at the conference should get this message across, but they should always remember this. They should also realize that there are people out there who care deeply about them and want to help them–treaters and otherwise. Lastly, they should be aware that we have treatments for BFRBs that didn’t exist a generation ago and that we are working diligently, via the BPM Initiative, to discover the next generation of even more effective treatments.
Most of you already know of Angela Hartlin – the most prolific #dermatillomania advocate and a cherished friend of TLC. Here, Angie talks with TLC member Jackie McNamara about her #BFRBcon experiences, the workshops she will be presenting this year and some thoughts on the challenges of raising awareness about BFRBs and derm.
How many TLC Annual Conferences have you attended and what was their impact on your skin picking journey?
I have attended two conferences. The first was in San Francisco in 2011 when Lisa Heyden and I filmed the documentary, Scars of Shame. That experience in itself was very time-consuming. While I didn’t get to delve into the conference emotionally, I did leave feeling motivated–as if I were leaving another world! I hadn’t before met anyone else in person whose dermatillomania (skin picking) was a daily struggle like mine, so it was an eye-opener in not feeling alone. At the 2013 conference in New Jersey, I presented two workshops and had more time to interact with attendees without having a camera follow me around. It was so amazing to see people I had met two years before; we were able to pick up as if we had seen each other just the week before! The conferences have helped me in my skin picking journey by allowing me the opportunity to really open up and talk about what I was feeling and experiencing with having dermatillomania. I have been able to take the confidence and knowledge attained from the conferences and apply it in television interviews.
What are you most looking forward to at this year’s conference?
I am most looking forward to seeing the friends I made at the prior two conferences and to seeing faces of people I’ve only spoken to online. There are going to be many people this year who have really put themselves out there to raise awareness and I am excited to meet them face-to-face, too. I think I’ll be leaving just as inspired as the other times! And, as always, I’m excited about using the hotel’s swimming pool! It’s a chance for me to be able to put on my swimsuit and rekindle my childhood passion for swimming, which was put on hold when this disorder left marks on my legs.
Tell us a little bit about the workshops you will be presenting this year.
One of my workshops is called “Accepting Without Giving Up.” Often, people with BFRBs lose hope and resign themselves to the idea that they will never be able to get help and move forward with their lives. The concept of accepting goes far beyond the idea of recovery; it also involves accepting where you are in your journey. Without being able to accept your current situation and learning to love yourself, you enter the vicious cycle of being too hard on yourself and increasing the urge to pick/pull. This workshop will show you how to go about loving and accepting yourself. My other workshop is a how-to in creating a Peer Support Group in your area. This idea can be intimidating for someone who is not looking to lead, but just to meet other people in their community who understand barriers that exist with respect to awareness of BFRBs and mental health issues. This workshop will provide tools such as guidelines and first-hand experiences to elicit confidence in the group leadership role. As co-coordinator of the Canadian BFRB Support Network‘s Groups, I’ve learned how, with work, challenges can be remedied for a successful group experience.
What is the most important thing you hope session attendees will take away from your workshops?
That I personally know what it’s like to be alone and to feel isolated and in despair because of my dermatillomania. It took time and tiny steps forward to implement what I learned through TLC, advocacy, and publishing a memoir, to become the more accepting woman I am of myself today.
What have you experienced as the biggest hurdle to BFRB awareness?
There are many disheartening hurdles when it comes to awareness and it loops around to a few people sharing the same awareness to the same crowds, which only recirculates information instead of creating awareness. Those who benefit from knowledge and awareness need to come forward with friends and family to support our efforts, even with a simple “share”/”reblog”/”retweet” of social media. There is strength in numbers; the more people who can support the efforts of TLC, CBSN, BFRB authors, and open community members who have shared their stories with the media, the more people who suffer like you and I do can become aware that they aren’t alone. It may even be a friend or family member waiting for that article to come across their news feed to change their lives!
Renae Reinhardy, PsyD, has presented at numerous TLC Conferences and Retreats. Dr. Reinardy specializes in the treatment of obsessive compulsive disorder, compulsive hoarding, trichotillomania, and related conditions. She has been interviewed on Good Morning America, the Joy Behar Show, Dateline NBC, and appears regularly on A&E’s Hoarders. We love her “whole body” approach to treating BFRBs, and are especially excited about her most recent project, Courage Critters, which seeks to help kids who suffer from trichotillomania, skin picking, anxiety and childhood fears. Here, TLC Member Jackie talks with Dr. Reinardy about the upcoming TLC Conference –>
How did you get involved with treating BFRBs and how long have you been doing so? I started treating BFRBs as a doctoral extern at the Behavior Therapy Center of Greater Washington. I had the opportunity to train with the best and for that I will always be grateful. I have been doing this work for a little over 15 years and continue to love it!
Tell us a little bit about the workshops you will be presenting at this year’s TLC Conference and what message you would most like to get across to attendees. I love to stay busy at the conference, offering workshops, meeting new people, and seeing old friends. This year I will be presenting “A Teen Guide for Managing BFRBs,” helping teens understand how their BFRBs function so they learn how to replace them, and “The Courage to Change: Techniques for Kids to Decrease Picking and Pulling Behaviors,” exploring some really cool and fun tools to be successful. I look forward to presenting on a comprehensive way of understanding BFRBs by looking at behavioral, cognitive, and wellness tools.I hope that attendees come to understand that their BFRB is not the enemy, but a messenger that is trying to tell them that their body/mind needs them to take action to put them into better balance. It is good to view picking/pulling urges like a growling stomach signaling hunger: What is the urge telling me I need and what can I do to take care of that need without picking or pulling?
From a clinical perspective, what do you think are the biggest advances in BFRB treatment over the past 15 years? There have been several great advancements, and of course we keep looking for more understanding and better treatment. I am excited to see skin picking as its own diagnostic category [in the DSM V]. I am also very pleased that public awareness has increased about these conditions and that people with BFRBs no longer have to wait as long to discover they are not alone. And I am thrilled about the professional trainings available, as well as the opportunity to train more competent therapists.
What do you see as the biggest hurdle to BFRB treatment access? We are working on it, but there is still a need to train more therapists and to better educate the medical community to understand that BFRBs are conditions that can respond well to treatment.
What advice would you give individuals with BFRBs who currently lack access to a knowledgeable treatment provider or local support? Use the support offered through TLC. Learn as much as you can about your condition and try to learn the function of your BFRB. There are some online resources like stoppicking.com, stoppulling.com and couragecritters.com. Most of all, never give up; I have seen people who have suffered for many years who have been able to make changes both with therapy and on their own.
Twenty-year-old Nicole Santamorena is a veteran TLC Conference attendee and a member of TLC’s Millennial Task Force. Her vibrant spirit and kind heart are two of our favorite parts of the conference each year! TLC Member Jackie McNamara recently chatted with Nicole about her conference experiences and her favorite parts of the event – keep reading below!
When was your first TLC Conference and how did you come to attend it?
I was diagnosed with trich when I was nine years old. I had been pulling since I was eight. I was bullied and felt very isolated until my parents found TLC and took me to my first conference in 2005. At 10 years old, it changed my life. After that first conference, I started educating my classmates about trich; I would tell anyone who wanted to know. I stopped being ashamed of my trich and skin picking. This will be my tenth conference and I couldn’t be more excited to attend!
What’s your favorite memory from past events?
My favorite memory would have to be when my dad finally understood my trich. He had come with me to prior conferences, but hadn’t attended any workshops. It was 2011 in San Francisco when my dad finally attended some workshops. After the weekend was over and we were on our way home, he told me: “Nicole, I finally get it. You can’t help it, sweetie, and I’m sorry I told you to just stop.” It was one of the best moments! So was meeting all of the incredible people and making lifelong friendships.
What are you most looking forward to at the 2015 TLC Conference?
I can’t wait to meet all the newcomers! I can’t wait to hear their stories and to try to help them in their journeys with BFRBs.
Tell us a little bit about the workshop you will be presenting this year and what you hope people will take away from attending it.
My workshop is about coming to terms with BFRBs as a teen or young adult. It is about learning to love yourself in a world that has harsh beauty standards and is quick to judge. In attending school for fashion design my freshman and part of my sophomore year in college, I realized that I wasn’t cut out for the harshness in the industry; I can’t be intentionally mean. (I ended up switching my major to costume design.)
My workshop is about creativity and self discovery, finding what you love and learning to implement it in your journey with BFRBs. I hope people come away from the workshop with: (1) tools other than physical strategies to be the best person they can be; (2) knowledge that there are people just like them who are looking for guidance and acceptance; and (3) the ability to see how special and loved they are–and believing they are worth the love they receive.
What advice do you have for first-time conference attendees?
My advice is this: I know how overwhelming it can be when you first walk into the conference. There will be hundreds of people just like you. Embrace them as family. This community, TLC, is a giant family of people across the globe. Make friends, enjoy yourself. This is a time for healing, discovery, and growth. Learn as much as you can; you won’t regret it.
Merrill Black is a licensed clinical social worker and founder of The Temperance Center in Eastchester, NY. Merrill has shared her nurturing, holistic approach at TLC events for over 24 years and is a cherished friend of the community. TLC Member Jackie McNamara, recently chatted with Merrill about her approach to treating BFRBs*, her favorite things about the TLC Annual Conference, and some tips for first-time attendees. Jackie shares their conversation with us, below.
I have attended the TLC conference every year since 2001. Rather than a specific memory, the nice part for me is reconnecting each year with former colleagues like Charlie Mansueto, who trained me in treating trich, and catching up with everyone I don’t get to see on a daily basis.
What do you think have been some of the most significant clinical advances in BFRB treatment since you started treating BFRBs?
I began treating individuals with BFRBs in 1997. One of the biggest advancements has been understanding the assessment process—using ComB & SCAMP models—to determine how to approach an individual’s treatment. We now have a better understanding of the disorders, what it is like for the person, how much of the behavior is sensory, emotional, habitual. One of the greatest shifts has been to approach BFRB treatment from a holistic, mind-body-spirit perspective. I incorporate CBT (cognitive behavioral therapy) with techniques like meditation, hypnosis, relaxation, etc.
Another big change has been a greater understanding of the inner workings of skin picking—and BFRBs overall—and the different ways in which people deal with them. For example, there is a body-image component to picking, which differs from pulling.
Tell us about the workshops you will be presenting at this year’s conference and what you hope attendees will take away from them.
“Sweet Dreams” is for kids 12 and under with Sherrie Vavricheck. Nighttime can be a really difficult time in terms of pulling or picking. We will explore strategies around the ComB model and incorporating relaxation. “Mindful Movement and Meditation” is for teens and young adults and will address breaths, movement, relaxation, and meditation to manage BFRBs. “Guided Meditation for Your Daily Life” is about how meditation can be really helpful to give a break/pause for managing on daily basis.
The workshops should be really fun. I would like attendees to learn to be gentle with themselves and have more options and tools to expand their repertoire, things they haven’t thought of to manage their BFRBs.
What advice do you have for first-time conference attendees?
Take it slow. It’s okay not to go to every single workshop. Be sure to take some time for yourselves. Most of all, come to the conference with an open heart.
Merrill Black, LCSW, is a cognitive behavior therapist and founder of The Temperance Center in Eastchester, NY. Merrill has been treating a diverse population of children, teens, and adults since 1987. Among her specialties are Anxiety Disorders, such as Panic Disorder, Obsessive Compulsive Disorder, Phobias and Fears, Generalized Anxiety Disorder, and Trichotillomania. Click here to contact Merrill.
*BFRBs, or Body-Focused Repetitive Behaviors, include Trichotillomania, Skin Picking (Excoriation) Disorder, Onychophagia, and other similar behaviors.
Great News! This Friday, millions of daytime television viewers will get information about dermatillomania (also known as Skin Picking Disorder).
Angela will discuss her experience with skin picking disorder while treatment expert and TLC Professional Member, Karen Pickett, MFT shares
important clinical information. Don’t miss out on this special episode that may have some surprises as well!
Please check your local programming to see what time it airs in your area. Or follow Angela’s Event Page for show updates, the link to watch the program after it airs, and to share your comments and reactions! (It airs on CBS/ NBC at 2pm EST, 11am PST.)
Thank you, Angela for continuing to speak out about dermatillomania and BFRBs!