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Skin Picking Disorder Advocate and Activist, Angela Hartlin, analyzes the results of TLC’s 2014 Skin Picking Community Needs Survey
From the little province of Nova Scotia on the east coast of Canada, it is with great honor to announce that I was chosen to be a part of the Trichotillomania Learning Center’s newly formed “Skin Picking Task Force”.
Some of you may know me from my advocacy work that accelerated with the publishing of my memoir FOREVER MARKED: A Dermatillomania Diary in 2009 while others are more familiar with my online work through skinpickingsupport.com and with Canada’s 1st non-profit organization for BFRBs, the Canadian BFRB Support Network (CBSN).
The first task that I was put to, along with this small group of strong voices in the community, was spreading the word of a survey back in June of 2014. With over 1200 respondents, I can say with confidence that this skin picking survey has to have had the greatest number of participants ever recorded, thus, creating more accurate results for us to move forward with!
Statistics create visibility and recognition to know where the community is at and it’s important to not only collect that data, but do something about the results. This is where the Skin Picking Task Force takes over in figuring out what to do with the information we’re given. Here’s some of what I’ve learned from all of your contributions to this survey and without you, we on the Task Force wouldn’t have known just how startling some of these results would be!
1. It was my belief, from the beginning of my anonymous advocacy in 2006, that Dermatillomania affects 1 male for every 8 females. This survey’s respondents with dermatillomania were approximately 3.5% male, 1.5% other identifying genders, and 95% female. These statistics are based on a lack of awareness for males and the struggle with males seeking support for mental health concerns, which is important to keep in mind. Perhaps we’ll find that the 1 in 8 figure is more accurate once awareness really takes off.
2. It confirms my suspicions that the median age of people who started skin picking did so at the age of 12. It was also my belief at the beginning of my advocacy that skin picking became a problem in menopausal women, not younger women, but I learned by speaking to people in forums that they started at the cusp of puberty as well. Some people reported picking as early as the age 9 or “as long as I can remember” to as late as 72 years old; the onset in the latter age could be caused by a number of geriatric concerns. Previous statistics saying menopausal women were the majority also tells us that despite puberty contributing to the onset of the disorder for most people, there are many factors beside age and hormones to consider when treating a sufferer of Dermatillomania.
3. 465 people knew what the acronym BFRB stood for (48%) while 489 (51%) did not. To answer this question, BFRB is the acronym for the umbrella term “Body-Focused Repetitive Behavior” which is defined by any chronic behavior that causes a person to consistently cause physical damage to oneself unintentionally through a compulsive act in order to relieve anxiety. This includes Trichotillomania and Dermatillomania along with other similar behaviours that are not as recognized.
4. 52% of respondents knew that Skin Picking Disorder was in the DSM. For the 48% who didn’t know, the previous version of the Diagnostic Statistic Manual (a book for mental health professionals), the DSM-IV, only mentioned skin picking in passing. In May of 2013 when the DSM 5 was released it was added under a new category called “Obsessive- Compulsive and Related Behaviors”. The medical term that was agreed upon by the DSM 5 committee was “Excoriation (Skin Picking) Disorder”, not simply “Skin Picking Disorder” as TLC had proposed, or the more commonly known name in the community, “Dermatillomania”.
5. A positive result is that 60% of you are willing to share information about skin picking on your social media pages! Statistically, this is the most preferred method of spreading awareness that people would partake in. Due to this information, let me share important Twitter, Facebook, and Tumblr sites to keep in touch with us:
To begin, will you share this article on your social media to begin letting the world know that at least 1200 of us exist and are actively seeking help? Tell the world that attached to these statistics are individuals who are hoping to remove our transparent position in society in order to bring about less confusion, stigma, judgment, fear, and more acceptance, treatment options, with the ability to recover.
6. When asked what 3 services you would like to see TLC offer the skin picking community, I was surprised to see that nearly 60% of respondents skipped this question. Could this be because we don’t know what is out there to help us? For those who provided your thoughts, it appears that the most desired wants is access to trusted and trained professionals, support groups, and more information output.
7. An alarming statistic about skin picking is that 48% of sufferers have not sought out treatment of any kind (through a dermatologist, mental health professional, GP, etc). Assuming that those who filled out the survey are those who struggle with it versus doing it as a normal grooming behavior, this is disheartening that we are too afraid of rejection, dismissal, mockery, or loss of hope for recovery and acknowledgement in speaking to any professional.
8. Only 244 out of 1200+ respondents chose to give us additional feedback on the survey. The top priority, which I’ll disclose that I contributed to, was changing TLC’s name to something to include skin picking. Although my book had been published in 2009, I wasn’t aware of TLC’s focus on skin picking until I attended the 2011 conference in San Francisco while filming for the now nearly- completed documentary “Scars of Shame”. I had come across it in my searches but thought that skin picking was an afterthought, much like in OCD communities.
Fortunately, TLC has expanded its skin picking network substantially in the last 3 years and with Excoriation Disorder (I hate the name!) being listed in the DSM, more research opportunities and awareness will occur. Still, TLC has heard the skin picking community loud and clear that despite being more pro-active in awareness of skin picking, having that recognition in a name is vital to bringing in sufferers looking for help.
What is going to be done with this information? The Skin Picking Task Force wants to keep you informed about how your contribution to this study will help shape the future of the skin picking community. We have been discussing many possibilities of outreach, based on your input, but our decisions have yet to be confirmed and we will announce what the plan is once we have a solid outline on how to execute it! We will still need your help when this happens, so stay tuned and also know that there will be exciting ways to contribute to awareness efforts for BFRB Awareness Week from October 1st-7th!
Thank you so much for your honest input! I can guarantee you that each and every one of your responses was vital to our findings. We are the future and have the power to create the resources we want and need in order to further aide us in our recovery journeys.
<3 Angela Hartlin
Guest post by Danielle Roberts. Danielle is a Canadian freelance writer who graduated from the University of Calgary in 2010 with a Bachelor of Arts degree in English. She is an avid runner, reader and mental health advocate who is committed to supporting others with dermatillomania. You can follow her on Twitter @PluviophileRead or on her blog: https://pluviophilereader.wordpress.com.
For those of us that are dealing and working through Dermatillomania, we’re all familiar with the major ups and downs of this condition. From going to a few weeks or hours without picking or just managing to reduce the picking to a minimum for a while, we’ve all encountered the occasional times after these instances when we are faced with a major relapse in our picking. These relapses are not only damaging to our skin but are often times devastating to our self-confidence and mental health. Here are some tips, remedies and advice to get back on track and staying positive through these tough times:
- Determine the trigger: Are you stressed? Getting enough sleep? Or perhaps you’re excited or anxious? These are vague trigger definitions but they are a start. Part of making progress with this condition is monitoring your habits and getting in touch with your triggers. Many people with this condition are self-sabotagers on other levels than with their skin. Whether it’s not getting enough sleep or exercise or just ravaging yourself with negativity and self-hate, recognizing these behaviors are essential for healing. Do you notice that you pick when you have trouble making decisions? When you’re overwhelmed and unorganized? When you have to face/deal with certain types of people or situations? Or are just triggered by perhaps the feel or look of your skin? Get specific and write it down. Create a habit log. It doesn’t have to be complicated but include things like how strong the urge was, how long you picked for, where were you when you were picking and how you felt. Once you start to notice a pattern of thoughts, behaviors and places where you pick you can start creating strategies for the future. Check out this great article on strategies for different types of triggers.
- Forgive and be kind: Relapses, just like skin picking, don’t define you or your progress. Be kind! Negative self-talk, hatred and pity will get you absolutely nowhere. Do not make yourself a victim. Victimization will perpetuate the cycle of picking and anxiety. Recognize that you’ve slipped, tell yourself it’s okay, give yourself a hug and look forward. I highly recommend diving into these books for further assistance in getting over some of these mental road blocks: “The Gifts of Imperfection” by Brene Brown and “Skin Picking: The Freedom to Finally Stop” by Annette Pasternak. Check out TLC’s Store for more book recommendations.
- Don’t let the relapse hold you back: The red open wounds of a relapse make most of us want to crawl underneath the covers and never emerge but this is often one of the worst things that you can do. Don’t cancel plans over your skin and don’t let it stop you from doing what you want to do. Reclaim your control and get out there! Wallowing at home often leads to more picking and negativity.
- Reinforce positive thoughts and go back to your picking-reducing behaviors ASAP: If you know you can’t control yourself in certain instances there are few things that you can do to help keep your hands away.
- Disposable medical gloves work really well in keeping hands away from the skin. They are thin enough that they don’t get in the way of everyday tasks (they even work with touch screens) but will prevent you from looking for and picking at perceived imperfections.
- Cover up: if your pick spots are on places on your body cover them up so that you’re not tempted to inspect your skin.
- Set timers and cover up mirrors: If the bathroom is a room you can’t seem to get out of then cover that mirror and get yourself a timer so that when you do have to make use of that room you’re on a tight time limit. Create a system of rewards and punishments for making or breaking these time limits.
- Fidget toys and spinner rings: Keep those hands busy! There are many places where you can get these great little trinkets for your hands. Check out TLC’s Store for a few of these great items.
- Don’t want a fidget toy or a ring? Try knitting or making friendship bracelets.
- Healing the wounds you have made: So you’ve made peace with yourself but you’re still left with the open sores. Try these remedies to speed up healing and reduce redness:
- Apply a clay mask: clay reduces redness and draws out impurities to prevent infection. It can however dry the skin out don’t leave it on for more than 20 minutes.
- Try a mix of honey, cinnamon and lemon juice: Honey (unpasteurized is best) and lemon juice have natural anti-bacterial properties to keep those sores clean and infection free while the cinnamon has anti-inflammatory properties to reduce redness and swelling. Leave it on as long as you want and remove by washing or wiping your face. This mixture works well on the fresh wounds, as it will help create a nice even scab making it less likely you will pick it off later and the sticky honey is a deterrent to keep your hands away from your skin.
- If you’re going to wear make-up try to let those wounds scab over to an extent and try not to cake it on. Use a green concealer to masks redness and a mix of foundation and pressed powders to get the best coverage. Get mineral based and oil free make-up to prevent further aggravation of your skin.
- Tea tree oil: a natural and pain-free antiseptic that will keep wounds clean and will dry them out quickly.
- Bactine: This pain-free antiseptic spray will clean out sores and has a pain reliever that will numb surface pain.
What are some of your tools for getting back on track toward recovery? Please share in the comments!
Online survey study about relationships and trichotillomania
American University is recruiting adults with trichotillomania who are interested in helping with research that aims to improve the existing treatments. Participation is confidential and involves answering questions about your hair pulling and relationships for about 20 minutes. All participants who complete the study will be entered into a raffle for a $10 Amazon gift card.
The survey is here: https://www.surveymonkey.com/s/LQF9RSF
If you have any questions about the survey, please contact Martha Falkenstein, a graduate student at American University, at email@example.com
Guest post by Laura Barton, Editor, Project Dermatillomania
Note from TLC: We were so very excited when Project Dermatillomania came out. Resources for skin picking are scarce, and personal stories about living with skin picking even harder to come by. Thankfully, we are seeing more and more people speaking out about picking, and we believe it’s largely due to inspiration the community receives from reading and sharing stories like those withinn this book. Humans need validation, and this book validates, normalizes, and makes us all realize –we are NOT alone.
I don’t remember exactly what was going through my head when I wanted to write a book about the skin picking disorder, dermatillomania. All I know is that I had a vague idea and a huge amount of anxiety at the thought of actually doing it. I wasn’t sure if I would be strong enough to face any potential backlash, and it would be even worse if that backlash came from my friends and family—the people I loved the most.
I sat on the idea for a long time. I wasn’t open about my picking at the time, which made the thought of it even more daunting. I had no idea if I would be able to manage.
Somewhere along the way, I realized, or at least speculated, that I didn’t have to do it alone.
On April 4th, 2012, I made a post to the Facebook support group Dermatillomania Awareness with a rough outline of my idea—a book by skin pickers, for skin pickers. Our stories, our voices. I wasn’t sure how people would respond, and was pleasantly surprised by a positive and eager group of messages.
From there, it was no longer just my book. It may be my name on the cover, but this book isn’t mine alone. This wasn’t just my story anymore, but the stories of amazing individuals from the BFRB community, more specifically, the dermatillomania side of it.
It’s difficult to put into words how amazing these people are—I feel like I wouldn’t be able to do them justice. However, it can definitely be felt in the pages of the book. Each word, each image, even the very title and formatting were all a team effort, and therefore a piece of each of our hearts. Every step of the way, everyone had a chance to share their ideas and make sure their voice was heard. This book breathes with the essence of the people who worked on it and brought it to life.
I realize now that writing and working on the book, and even all that is coming after, is a lot like my experience with skin picking disorder itself. In the beginning, I thought I could go it alone. What I learned is that I didn’t have to, and even more so that it was better not to. Working with everyone else on this book has given me courage and eased my anxiety. Project Dermatillomania: The Stories Behind Our Scars is a representation of the community and in a way a mirror image of it. The book shows how in sharing our stories we can find comfort and even strength; how when we stand together we can work towards something better.
It may not be the book that I originally envisioned a couple years ago, but it is something that I am proud to share. I am more than happy that it turned out the way it did and so excited to share our book with the community and anyone beyond.
Project Dermatillomania: The Stories Behind Our Scars is available through the Trichotillomania Learning Center (TLC) online store, as well as Blurb.ca, the Canadian BFRB Support Network (CBSN). 100% of proceeds are going towards CBSN and TLC.
A friend in Somerset UK has started a website to create support for people with trich. Check it out! http://trichsomerset.weebly.com/
I have Trich myself.
I am desperate for someone to talk to.
Someone that understands that it isn’t just as simple as stopping.
There are so many things I would like to do to raise awareness,
find more information, start a physical group.
Please contact me if you are interested in any of this.
The goal of being “pull-free,” is a phenomenon showing increased popularity, particularly in online trichotillomania/dermatillomania communities. For those who are unfamiliar, “pull-free” is a term used to label any amount of time spent without engaging in hair pulling. I truly commend each person who has managed to achieve this goal in any capacity. I envy their courage and determination. However, I am not one of those people.
For many, being pull-free requires a tremendous amount of effort and concentration. For others, being pull free seems impossible. And finally, for some (including myself), being held to pull-free standards causes more anxiety than dealing with the physical and emotional consequences of hair pulling. This is something that I recognized only after years of fighting with my own hands and guilty conscience. Struggling to be strictly pull-free brought me shame and self-doubt where I desperately wanted to find freedom. I saw all the success stories online, and couldn’t understand why I wasn’t one of them.
Don’t get me wrong, I believe that the online communities are nothing but encouraging and supportive. My issue with pull-free culture is one that I find in myself, not in those who are finding freedom by setting healthy goals. My perfectionistic standards left me incapable of setting realistic goals in terms of hair pulling, causing me to let myself down time and time again. I am sure this is a feeling that many can empathize with, which is why I want to remind you that being pull-free is not the only way to be free of your trichotillomania. It is possible to find peace and freedom through acceptance.
My trichotillomania doesn’t bother me anymore. I still pull, but I’m not a worse person for it, and I don’t let it dictate where I go or who I see. Reaching this point has been a long and difficult journey for me, but I honestly believe that I pull less episodically and deliberately now than I did while trying to be pull-free. I owe my success to a combination of Cognitive Behavioural Therapy (CBT), positive reinforcement based support, increased independence, and ultimately self-love. I didn’t change overnight; learning to appreciate my gains through CBT seemed ridiculous at first, but the seed was planted in my mind. Now I can distinguish a setback from a disaster, and even if I pull to cope with the “disasters,” I know that at least I am coping, rather than letting them knock me down.
If you recognize yourself in my story and find yourself overwhelmed by the pressure to be pull-free, I encourage you to consider whether being pull-free is a healthy choice for you. Making the choice to accept yourself is not giving up. It also doesn’t mean that you have to give up on regulating your pulling. The way I see it, acceptance simply means measuring your self-worth without factoring in the number of hairs you’ve pulled today.
By Siobhan Churchill
Sarnia, ON, Canada
Available on kindle, and as a paperback, Doesn’t it Hurt? Confessions of Compulsive Hair Pullers shares the personal stories, struggles and tribulations of 15 men and women from from 5 different countries and range in ages from 18-65.
Edited by blogger and BFRB activist Sandy Rosenblatt, Doesn’t it Hurt? is inspiring, heartfelt and will resonate with those of us who know what it’s like to live with picking and pulling. Even though the authors of each essay use their first name only, many are people you may already know, via facebook groups and TLC events.
We asked Sandy to share some of her favorite excerpts from the book. Here’s what she sent us:
Those of us with trich can often feel broken and alone. We want to tell people we’re hurting, but we’re afraid of what they’ll say. We’re afraid they’ll reject us. We’re afraid because in a way, we reject ourselves. – Sandy
The fact we wake up in the morning is already a win. In the grand scheme of things we were always on the outside looking in. That used to bother me to no end. Then I just decided to enjoy the outside. – Billy
So what have I learned? I’ve learned that it’s possible to live with trichotillomania, and that although there will be days I will cry, that it doesn’t define me.- Hope
I wanted to share my story because I know what it was like to go through feeling alone, freakish and all-around horrible about my hair pulling. I hope that by talking about my experience I can show that trich doesn’t have to be a barrier to fulfillment. – Jarrah
I believe my success comes from taking trich along in my journey through life. – Sebastian
It is still very hard for me to share my pulling with others, but I handle inquires better than I used to. I’ve learned just because someone asks me a question doesn’t mean I have to answer. – Kensington Rose
It’s time to talk about trich. The power of several voices is what will help break the stigma. – Sarah
Nobody is perfect and you are not the only person in the world. Relax. Nothing and nobody will sink because you made a mistake or pulled out your hair. -Jose
At the end of the day, it’s just a thing. We’ve all got one. -Diana
You can read a longer excerpt and order the book for kindle or in a paperback edition. Just visit amazon.com >>
Proceeds from both books will be donated to TLC and the Canadian BFRB Support Network.
Have you read Doesn’t it Hurt? yet? We’d love to hear what you think! Let us know in the comments….