Being Part of a Hair Pulling/Skin Picking Support Group

I love being part of and leading the support group in Dallas. Let me be straight with you: I’m the type of person who never thought she would join, much less, lead a group. In fact, the first time I went to a group meeting over 10 years ago, I bawled my eyes out and don’t remember much…and, I didn’t go back. And, that’s ok, because it wasn’t the right time for me – I wasn’t ready for a support group.

On to the present: Why did I join this support group I am now a part of? A number of reasons:

  • Community. Not the gated communities we live in, but a real, I-get-exactly-what-you’re-going-through community of other hair pullers and skin pickers. We come from various backgrounds and ages, yet we are all bound together by a deep, instant understanding of our shared condition. Hair pulling and skin picking and its stigma becomes weaker when we are part of this community.
  • Smiles. I can’t stand keeping a schedule on the weekends. Yet, I can’t wait to get to the support group meeting scheduled each month on Sunday afternoons. I know I will see both all of my old buddies, and new faces alike. Even though sometimes new faces arrive sad, they always leave smiling because they’ve experienced a powerful connection with others. This hope is what energizes us day to day.
  • Awareness. As you’ve probably read elsewhere on this blog, in Christina Pearson’s book, Pearls, and in nearly every quarterly TLC newsletter, half of the battle – especially for primarily involuntary pullers like myself – is maintaining awareness. It’s a lifestyle choice that must be practiced daily. Every time I think about the next support group meeting, it raises my awareness to my overall goals. With awareness comes choice, and the ability to change.

If you are reading this blog, you are most likely in the information-gathering phase. I know, because I have been there. If you’re ready to take a deeper dive into to the TLC family, consider attending a support group meeting. Find a support group near you. If you want information on what is involved in starting a support group, read more here or feel free to email me if you want to trade ideas at dfwtrich@gmail.com. ~Susannah, Trich Support Group Facilitator

The TLC Conference: One Med Student’s Review

Note from TLC: The following post was written by Lisa Zakhary, who received the Medical Student Scholarship to the 2011 Conference on Hair Pulling and Skin Picking Disorders. In this essay, Dr. Zakhary relays her experience at the national conference.

I am currently an outpatient psychiatrist at the Massachusetts General Hospital Obsessive Compulsive Disorder (OCD) and Related Disorders Program in Boston, Massachusetts which provides clinical care for people with OCD, body dysmorphic disorder (BDD), trichotillomania (TTM), skin picking and tic disorders. As a psychiatry resident, I had the distinct pleasure of attending the 2011 National Conference on Hair Pulling and Skin Picking with generous support from the Trichotillomania Learning Center (TLC) Student Travel Grant.  It was an incredible combination of the latest basic and clinical research, psychopharmacologic and therapy practice guidelines, sharing of personal experiences, and making new professional contacts and friends.   I am deeply grateful for the opportunity to have been included and wanted to summarize some of the key points that I came away with.

Research is abundant.  Some of the most recent findings in body-focused repetitive behaviors (BRFB) were presented during the conference. Dr. Samuel Chamberlain reviewed various approaches to identifying brain regions responsible for TTM including neuroimaging patients with TTM or patients with traumatic brain injury with impaired impulse control.  The amygdala, putamen, and right inferior frontal gyrus were implicated in these studies.

Dr. Jon Grant also reviewed some of the neurotransmitters believed to be involved in BFRBs including serotonin, dopamine, and glutamate.  While drugs that increase serotonin levels such as selective serotonin reuptake inhibitors can improve BFRBs, he cautioned that drugs such which increase dopamine levels such as stimulants can worsen picking.  N-acetylcysteine (NAC), a glutamate modulator, has been shown to reduce hair-pulling.  Dr. Grant also described ongoing and unpublished clinical trials of dronabinol.  Dronabinol is an FDA-approved legal cannabinoid agonist which is thought to suppress damage from excess glutamate.  Interestingly, 2/3 of study participants taking dronabinol showed a decrease in hair pulling.  Final results are pending.

Other ongoing research studies were presented at the poster session.  Topics included a controlled trial of habit reveral training in youth, styles of hair-pulling in adolescents, developmental factors and comorbidities of TTM, validity of diagnostic criteria in TTM, attentional bias in TTM, impulsivity in skin picking, tirchodagomania (hair biting), outpatient dermatologist knowledge of psychodermatology, and  assessment of 2010 TLC conference attendee experiences.

BFRBs can lead to serious physical, emotional, and social consequences which are often overlooked.     In a talk entitled “Picking and Pulling 101,” Dr. Fred Penzel presented a comprehensive summary of not only the basics, but some of the finer points of hair pulling and skin picking that may go unnoticed.  He encouraged clinicians to inquire about specific sites of picking/pulling including eyelashes, eyebrows, and pubic regions as well as avoided situations such haircuts, swimming, wind, sexual intimacy, and lighted areas.  He recommended inquiring about the medical complications of picking and pulling like repetitive strain injuries, tendonitis, skin infections, gastrointestinal blockage due to eating hair, eye irritation, and medical conditions caused by avoiding medical visits.  He urged practioners to also assess the emotional consequences of BFRBs such as low self esteem, shame, secrecy, isolation, and loneliness.   Co-occurring psychiatric illnesses are common among patients with TTM.  In fact, 26% of people with TTM have OCD, 23% have major depression, and 23% have generalized anxiety disorder.

BDD is common and deadly.  Dr. Scott Granet described the clinical features and treatment approaches of BDD in a talk entitled “Understanding and Treating Body Dysmorphic Disorder.” It is surprisingly common affecting 11.9-15.8% of patients in a general dermatologic setting (~3.5 million people in the U.S.) and is defined by having a preoccupation with an imagined or slight defect in appearance which causes significant impairment.  Associated behaviors include frequently checking mirrors, camouflaging the area, comparing disliked body part to others, touching the area, skin picking and seeking reassurance from friends and family about the perceived flaw.  It can lead to social isolation, strained relationships, poor self-esteem, and suicidal ideation.  In fact, 80% of people with BDD consider suicide and 25-30% attempt suicide.  Dr. Granet bravely shared his own struggles with BDD, providing a genuine perspective of life with BDD.  He warned practioners to always closely assess for suicide and educate sufferers of BDD about this common and deadly problem.

BFRBs are common, yet treatment options have historically been limited.  Dr. Penzel presented staggering prevalence data about the BFRBs. Large studies of a non-clinical representative college student sample, showed that 1.5% of male students report hair pulling, 3.6% of female students report hair pulling, and 4.6 % of students suffer with skin picking.  Despite these numbers, Dr. Penzel presented the TIP-A study by Woods et al. in 2006 which showed that 53% of health-care providers were either not knowledgeable about TTM or had only “heard” of TTM.  This is not surprising since psychiatrists and psychologists receive little if any training in the diagnosis and management of BFRBs.  Similarly, dermatologists who frequently encounter patients with BFRBs receive little instruction in psychopharmacology or therapy leaving the newest generation of dermatologists, psychologists, and psychiatrists largely underprepared to treat this population.

To accommodate this need, TLC recently created a series of training DVDs for healthcare professionals wishing to treat BFRBs.   The course is lead by expert Drs. Charles Mansueto, Fred Penzel, Ruth Gold-finger-Golomb, and Dr. Suzanne Mouton-Odum. Practioners completing the course will receive certification and will be listed for referral on the TLC site. In addition, several multidisciplinary psychiatry-dermatology clinics have cropped up throughout the country- including but not limited to San Francisco (University of California in San Francisco, Dr. John Koo),  New York City (St. Luke’s Roosevelt Hospital, Dr. Carmen Grau), and Saginaw, Michigan (Dr. Mohammad Jafferany). Dr. Jafferany presented an overview of psychodermatology at the TLC Conference which broadly includes the skin conditions at the interface of psychiatry and dermatology, ranging from primary psychiatric conditions with skin manifestations (e.g. compulsive skin picking, TTM) to dermatologic conditions with secondary psychiatric symptoms (e.g. depression from a disfiguring skin condition). We have also recently established a psychodermatology clinic at MGH in Boston.

Despite these advances, it may still be difficult to find a provider.  Many speakers at the conference provided potential sources of help- including the Trichotillomania Learning Center which lists providers by state, Obsessive Compulsive Foundation, International OCD Foundation, Anxiety Disorders Association of America, BDDCentral.com, Association for Behavioral and Cognitive Therapy, Local TTM/OCD support group, local OCD/Anxiety Clinic. In addition, Drs. Jon Grant, Nancy Keuthen, Daniel Stein, and Douglas Woods recently published a book entitled Trichotillomania, Skin Picking, and Other Body-Focused Repetitive Behaviors which has a wealth of clinical, research, and resource information.

BFRBs are a family affair.  Although I have attended many conferences, never have I witnessed such an outpouring of family involvement and support.  I was pleased to meet siblings, parents, and spouses of sufferers. I was struck by the enormous bravery and courage not only of those who presented their painful and poignant histories to an audience of hundreds like director  Christina Pearson, but for those who quietly put up with multiple treatments until finding the right combination, for those who have been diligently searching for treaters, for those who keep their eye on the latest advances, and for the families who continue to support their family member unconditionally through treatment.

And so, while there may not be a simple “cure,” there are an increasing number of therapeutic and psychopharmacologic options, bolstered by rapidly evolving research,  and I have come away from this conference with hope, looking very much forward to the next.

A Getting Started Guide for Parents

TLC’s Parent’s  Email Support Group is a fantastic resource for parents across the world. With over 1500 members, the email group (just one of several) provides support, advice and guidance for parents, from other parents. In response to a series of recent questions from group members, I posted the following info as a guide to “Getting Started”  on this potentially overwhelming road to helping your child with trich or skin picking.  I’m re-posting here to share with everyone! I hope you find it helpful….Leslie, TLC

Congratulations on finding this support group! My name is Leslie, I’m the Program Coordinator at the Trichotillomania Learning Center, the owners and moderators of this e-group. I’m also the TLC’s event coordinator, newsletter and website editor, and parent of a child who has on-and-off issues related to BFRBs (body-focused repetitive behaviors).

It’s great to see parents get proactive about their kids BFRBs (body-focused repetitive behaviors, which includes hair pulling, skin picking and nail biting). There are a lot of new members on this group, so I wanted to share my sort of my step-by-step guide of what Parents need to Know when you are new, or re-visiting, BFRBs (this info is also what helped me).

1. Educate yourself fully about what trich is, what it isn’t, what works with it, what doesn’t.  There are many things YOU can do with your child to start on a recovery program. It’s good to see a therapist if you can…but keep in mind that with young children, you may not get the results you are looking for. I’ve posted some links and resources below to help with this.

2. Remember your child is not their hair, nor is their hair yours. As parents, we often have a hard time seeing our children as separate unique beings. They will have their own battles in life, and we can be their biggest supporter, but we cannot fight all of their battles for them. Trich is one of those battles.

4. KNOW this: the MOST damaging effect of hair pulling is not the loss of hair, it is the loss of self-esteem. If your child eats their hair, then yes, there could be serious consequences. If you child picks skin, then yes, they could get an infection or be left with scars. However, with any BFRB, and with any child, for that matter, maintaining self-esteem is crucial. Don’t lose sight of this!!

5. Do not you pressure your child, or make him feel bad in any way for picking/pulling. Your child is not in control of this behavior! If you make a big deal out it, talk about it all the time, ask questions incessantly, your child will likely feel he/she is letting you down or disappointing you, it will only increase the anxiety and increase the pulling urges.

6. About Therapy: If you choose to seek professional help for your child, and if you have access to a therapist that treats trich, see them first. There is too much mis-information about these behaviors to experiment with someone not familiar (or to experiment with medications). If your therapist is not willing to learn about BFRBs and recommended treatments, find a new one! TLC will provide ANYONE with as much information as possible. We have a great article in our Comprehensive Info Guide by Dr. Fred Penzel about HOW to legally get insurance coverage for trich (even if it is via reimbursement). If your child is prescribed medications, do your homework, get a second opinion, make sure you read this : Medications for Treatment of Trichotillomania and Skin Picking. Sure meds might help, but there are a lot of caveats that come with that statement. Also, even if your child doesn’t see a therapist, allow yourself too, if needed. Trich is overwhelming for parents, we have mixed emotions of guilt, blame, failure and frustration. These feelings are best worked out without your child.

INVALUABLE RESOURCES

Books and DVDs for Parents: http://yhst-96492593834123.stores.yahoo.net/boforpaandyo.html

The Hair Pulling Habit and You is an excellent workbook to help you and your child develop a CBT-based program at home. Every parent with a child under 16 should read this book.  Stay out of My Hair is written by the same authors…and helps YOU understand what parenting strategies are helpful, and harmful, as you work with your child. If you are having your own anxiety and shame about your child’s disorder, or feel your child is working against you, then read this book. With trich, throw everything you think you know about being a good parent out the window. It’s a different monster, and your instincts for dealing with it are probably wrong (mine were).

FREE Articles to read for self-help tips and strategies:

Treatment Guides: http://www.trich.org/dnld/ExpertGuidelines_000.pdf TLC has a Scientific Advisory Board (SAB) consisting of 20 passionate, caring, and dedicated researchers and clinicians who have dedicated their careers to helping your children. This booklet is their guide to what we know works.

N-acetylcysteine for Trichotillomania, Skin Picking, and Nail Biting: http://www.trich.org/treatment/NAC_Trichotillomania.html One of these SAB members conducted this break-through study. TLC has consequently funded a pediatric trial of NAC in young hair pullers. The results are being evaluated and will be presented at the 2012 Conference in Chicago.

A Backpack Full of Strategies for Parents: http://www.trich.org/treatment/BackpackofStrategies.html

Mom Steps up to the TTM Plate! Advice for Parents: http://www.trich.org/treatment/article-advice-parents-lechtman.html

Strategies for toddlers and young children: http://www.trich.org/treatment/article-toddler-golomb.html

The last two links included self-help strategies that I employed with my then-5-yo puller. He doesn’t pull anymore (but does suffer on-and-off with other similar behaviors). Print these articles out, refer to them often, share strategies and ideas on this board.

Become a TLC Member: http://www.trich.org/involved/join.html

TLC’s free message boards are  supported by TLC members. Research into treatments is supported by TLC members.  TLC members also pay for our vast free website, treatment provider training, and all of our awareness and education programs. TLC Membership provides the benefits of receiving any and all info we have available, including our 200+ page Comprehensive Information Guide, quarterly newsletters with exclusive members-only content ( the articles above were in the newsletter originally), and large discounts on events. TLC is the ONLY nonprofit working to better the lives of your children, we receive ZERO government funding or grants, yes, our small staff of five directly supported over 220,000 people in 2011 (not to mention the 1.2 million website visitors). Pretty impressive, right?! And, your membership is tax-deductible…it’s a win-win! And if membership is not in your budget right now…reach out to us. We are here to help.

With love,

Leslie, TLC

Don’t Miss the Tax Deadline: Give now and Get a free year of TLC

As Founding Director of TLC, I have dedicated my life to finding a cure for Hair Pulling and Skin Picking disorders. For you, me, our children, and our children’s children.

I believe that together, we CAN achieve this, and should. THIS is why TLC was established. THIS is why our Staff, Executive Board, and Science Advisory Board works so hard – and is supported by our members – people like YOU.

Now is the time to donate to TLC, and still receive a tax deduction on your 2011 taxes. As a thank you for any gift over $45, we’ll send you a Membership packet – with hundreds of articles, resources and discounts to TLC events.
I know the pain well. None of us should have to face these problems alone, and we all deserve to heal. Thanks to TLC, today there IS rigorous scientific research, trustworthy information, a community of support, treatment referrals, and increasing public awareness. But sadly there are still thousands of people suffering alone, without access to effective treatment, and much work to do in achieving the goal of a cure.
TLC is the only non-profit organization funding research, educating treatment providers, and working to end the suffering caused by hair pulling and skin picking.
If you care about this cause, please give YOUR support. Now. Today.
Wishing you a pull-free and pick-free New Year.
In Love and Service,
Christina Pearson
TLC Founding Director
P.S. If you are interested in making a stock or securities donation, please give us a call today at 831-457-1004. I will be SO happy to speak with you!

Trichotillomania Learning Center – TLC
207 McPherson St. Suite H | Santa Cruz, CA 95060
Phone: 831-457-1004
Web: www.trich.org
Email: info@trich.org
TLC is a 501(c)(3) national nonprofit organization,
our EIN# is 77-0266587.

Call for Proposals: TLC Research Grant Program

About the Program

TLC’s Research Grant Program is a donor-funded program designed to provide funding for seed projects. The goal is that these smaller projects, once completed, will garner interest from larger funding organizations. TLC will not fund any indirect costs. Please contact us if you would like more information.

Eligible Research Programs

Any research study that may contribute to the understanding and/or treatment of TTM, compulsive skin picking and related Body-Focused Repetitive Behaviors (BFRBs) – these may include experimental psychopathology studies, clinical studies, or investigation of phenomenology and impact across the developmental spectrum.

Projects will be considered for funding up to $20,000 per year, although smaller projects may also be proposed.

Candidate Requirements

Candidates must have a relevant advanced degree (MD, PhD, PsyD) or be enrolled in a degree-granting program. If a student submits proposals, a research mentor must be identified in the letter of intent and in the application.

Letter of Intent

Applicants should submit a brief (no more than 3 pages) letter describing the investigator(s) and site(s), the proposed project and its scientific relevance, and a budget estimate (total costs – no detailed budget is needed at this stage).

The letter of intent is due December 16, 2011, and will be reviewed by members of TLC’s Scientific Advisory Board.

All candidates will be notified via email by February 4, 2012 of whether to proceed with a full research grant application, the details of which will be described for selected candidates in that communication.

Letters of intent should be submitted via email to Jennifer Raikes: jennifer@trich.org

Complete Grant Application Due Date: March 31, 2012.

More Information: http://www.trich.org/research/grant-program.html

To submit a proposal does not require IRB approval. To receive funding, however, the proposal must have an IRB approval.

Grant applications will be reviewed by a panel of TLC SAB members may 4, 2012, and notification of award will be made by June 10, 2012.

Grant applicants will be required to present on their subject at the 2012 TLC Annual Conference. Recipient must allocate 1000.00 of grant funding toward the cost of attending the 2012 Conference in Chicago, May 4-6, 2012.

 

 

 

Update: College, Pulling, Picking, Support from Maddie M

Hello fellow trich-sters,

Here I am, in college.  I feel so frustrated.  I thought I’d finally gotten control of my trichotillomania, being one-hundred-and-forty-something days pull-free, only to find the disorder manifesting in a new and unusual way.

I started picking the skin on one little spot on the top of my head a month ago.  I do not know what brought this on, but the picking has been relentless. The pus and the blood felt so disgusting, and so good, underneath my fingernails.  There is no doubt in my mind that skin picking and hair pulling are so closely related that they must be brother and sister.  I clipped my nails short a week ago and somehow my picking episode must episode faded away and the scab healed.  Luckily, I isolated my picking spot to one area.  I swear, if it’s not one thing it’s another.

In unrelated news, I want to start a trich support group at my university.  Since I’ve suffered and fought and lost and won many battles with trich I’ve become more aware of other people’s tics. I notice when other people pull their hair or pick at the skin on their hands.  I can tell when somebody is wearing a wig or if someone has bald spots they’re trying to hide.  With this strange gift, I’ve noticed other students on my campus with trich.  I’m not sure how to go about starting the support group since it wouldn’t be very nice to go up to someone and ask them “Hey, do you have trichotillomania? I noticed your bald spots, and I thought you did.  I have it too! We should talk some time.”  That might catch people off guard.

Hmmm…. How do you go about something like that?  Has anyone else started a group at your college? How did you tell people about it?

Is Trich another bourgeois problem?

One of TLC’s wonderful, amazing donors recently sent in a check with a short comment attached: “Keep up the good works!  PS: It seems like such a bourgeois problem–that is my challenge when thinking about it.”

That unease about supporting Trich as a charitable cause struck a chord with me.  I could really relate to that feeling.  I wrote the donor a note, but realized that perhaps many other people have struggled with that same feeling, too.  It is important not just because it effects support for our cause, but because it may be a sign that we don’t feel valid in our own suffering from pulling or picking.

I’ve always been a ‘volunteering’ person and from a young age knew that I wanted to help “save the world” in some way…  I remember when I first started the support group in NYC 15 years ago, I thought to myself, “THIS is the problem I’m devoting myself to?  Is this really where I’m most needed?”  Despite the pain trich had caused me, it felt very trivial at times, compared to famine, war, abuse, and countless other problems.

But I can honestly report now, having been involved for so many years and talked with many hundreds of people, that picking/pulling really isn’t a bourgeois problem.  Whether or not it SHOULD cause great suffering, it DOES.  And it hits people of all social classes, personalities and backgrounds.   In fact, the families with the least financial resources have the least access to help, and often suffer the most.

Though most of the time hair pulling and skin picking aren’t life-threatening, they can be. Ingesting hair leads to emergency abdominal surgery. Despair over pulling or picking contributes to suicidal depression.  Just last year we lost two dear TLC members to suicide.

Even when, as in most cases, hair pulling and skin picking are not life-threatening problems, they do cause great pain.  It isn’t just cosmetic angst.  It is the pain of isolation, of disappointment in oneself, in feeling or being treated as damaged or weak.
I carried on volunteering and now working for TLC over the years because I could feel my efforts were making a tangible difference.  And so, I’ve realized this IS the problem that “most needed me” – and needs YOU too –  because few who are not directly affected by trich (or skin picking) care enough to push for change.

When we create a world where:

  • Body-focused Repetitive Behaviors (BFRBs) are diagnosed quickly.
  • BFRBs are not a source of shame.
  • Knowledgeable treatment is available to all people with these disorders.
  • Treatments are more effective and eventually cures are found.
  • Information and emotional support are available to people of all ages and their families.

Then maybe I’ll run off to become a human rights crusader or environmental activist or …  (or retire on a beach somewhere – I’m not 21 anymore!)

~Jennifer Raikes

TLC Executive Director

Trich on My Mind

by Inez Asante

From TLC: Another great post by a TLC Volunteer. if you have a personal story you’d like us to consider for the blog or our member newsletter, email leslie at (@) trich.org.

When you look at yourself in the mirror, you see so many different aspects of who you are, who you can be, who people perceive you as. A person with so much potential and so much to give yet your one flaw is the missing patch on the right side of your scalp. You don’t know why you do it, you barely notice when you do it. It is that much of a norm to you. Nobody understands including yourself, all you know is that you want to stop and regain control. The statement above that “Nobody understands “is a false statement, because even though you may feel that way, someone else is also in that same situation and you are not alone.

I know that relaxed feeling you feel when you pull, and how you hide it so you do not disappoint you’re loved ones. Yet I also know that it is possible to overcome this pressing obstacle. Suffering from Trichotillomania since I was ten years old, even having extreme cases to the point where I had shaved all my hair to start new. That did not stop my hardships though; on and off I would continue to pull and sometimes even breakdown in tears. I kept it from friends and even family. Yet I could not hide it anymore and came clean and worked hard to stop. Whenever I felt my hands going through my hair I would twist and release, or even think about the numerous people that wished for hair. Now at the age of sixteen I can say I survived and you will too. You are strong; you are full of potential, and most of all human. This is just a speed bump on the road and although it is not an easy battle to overcome, it is possible. I will always be a “puller” and I accept that but you take it a day at a time and one day you will reach that moment when you realize you don’t even do it anymore.

Helen Keller once said, “The struggle of life is one of our greatest blessings. It makes us patient, sensitive, and Godlike. It teaches us that although the world is full of suffering, it is also full of overcoming it.” Having Trichotillomania will not stop you from living, you can’t let it. I hope finding the TLC organization has helped the struggles you face, because I know it has helped mine. I always felt alone in this problem, I did not know pulling even had a name or was classified as Trichotillomania, but finding a number of people who felt exactly the way I did, was the most comforting feeling. I have come to a place in my life where I don’t pull anymore and I know you will too!

Musings from Christina

Happy Summer!
I am growing my hair long. Why? It’s a personal quest to better understand the impact of all the treatment, strategies, and ongoing awareness practice I have put into place in my life.

Yes, I want deeper cognition into my own recovery process. At the grand and amazing age of 54 (soon to be 55), I would like to experience long hair again while I still have some natural color (I have kept it fairly short for years now).  I also want to find out if my hunch is right and that certain things have changed, in terms of sensory triggers, reactions, distress tolerance levels, and how I approach my own hair in general, after maintaining aware recovery for about 12 years. Plus, I love long hair, but years ago could never handle all the stimulation it gave me!

This is about me. I pulled in isolation severely for 21 years, and picked my skin for 15 of those, before I knew there were others.  After this discovery, and during the development of TLC, I spent 10 years in alternating periods of relapse and remission, in treatment, some good, some not so good, but always learning.

Today, I have maintained a high level of recovery for 12 years. I am now more likely NOT to engage in behavior, than to engage in it! So why am I doing this personal “challenge?”  Why not just keep my hair short, and not push the envelope? Because it is important, as it will give me deeper understanding of my own process, and hopefully, will allow me to share from personal experience how I navigate this path, from the inside-out.

Is this scientific? No. I leave that to our beloved scientists, who, as you can see in this research-focused issue, are hard at work and deeply worthy of our ongoing support and gratitude. Without them, TLC would not have been able to lay the groundwork that we have for effectively moving the field forward. There is still so much to do, but these clinicians and researchers are my heroes, for all they have accomplished in a few short years. Can’t wait to see what unfolds in the next few!

On a personal level I have found that, for me, there is no clear dividing line between the emerging science of my disorder and the spiritual homework of living with it. And that, while people desperately need accurate, useful information, and access to effective treatment, they also need deep empathy, recognition of their distress, and a kind of “bridging of shared experience” to really kick-start the recovery process.

For instance:  when someone wants a good overview of current knowledge, or wonders if there is a treatment provider we are familiar with in their area, we can often oblige, with tremendous beneficial impact. But what do we say to the mom who emailed on Friday to ask if spanking her toddler child for pulling is the “right” or “wrong” thing to do?  To the heart-broken mother whose daughter just had major surgery to remove her second large trichobezoar (hair-ball) from her stomach, even though she is in treatment? To the thirty-six year-old man who just wants to know “But WHY do I pick my skin?” To the sixteen-year-old who texts me that her parents just don’t believe she is trying to stop?

Many, many of the questions that come in we can now answer with some degree of clarity, offering data, resources, treatment information, and useful strategies, with a growing body of rigorous research to back this information up. But for many questions there are no clear answers, so it becomes the work of the heart.

At TLC, it is our charge to hold and honor the space that allows validation of experience; to maintain hope, encouragement, and commitment, even when confronted with someone suffering 40 years of unnerving, relentless, life-destroying  picking or pulling behavior.; to recognize, accept, and ultimately give voice to behaviors that are shame-bound, publicly ridiculed, and seen as generally demeaning.  This takes heart, commitment, and courage, especially when you know that you cannot fix it, don’t have the exact answer (yet), and that even if you do have useful resources or referrals, the person in need may not be able to access or utilize them for a variety of reasons.

For this loving service I thank my coworkers at TLC, for each of us must deal with this challenge on an almost daily basis.

The experiential process I am embarking on here is not only for my own edification I hope, but others, also. I am told (and have seen the evidence in brain-scans) that changing specific behavior over time, with intentional awareness, and reinforcing it through practice, can impact and alter the “neuronal architecture” of related pathways in the brain, at least to some degree.  I was always triggered by the length of hair. I want to see what happens now, after years of “practice.” In other words, I want to mindfully experience what research has discovered, if at all possible.  I also want to be able to describe it, personally, from the inside out, although it will be as a piece of prose, rather than as a report!

Looking forward to seeing you at this year’s Retreat.
Love, Christina

Note: This entry is re-published from Christina’s July newsletter column, mailed to TLC members a few weeks ago.  It seemed timely to share as we are in the midst of planning the retreat, working on the 2012 Research Grant RFP, and launching the 2012 Hands-Down-a-Thon/Awareness Week Campaigns. Plus it’s been awhile since we’ve heard from Christina!

Speaking Out #Trichotillomania

Speaking Out #Trichotillomania.

 

Great post! Thank you for sharing and giving TLC a Shout Out!