It’s a phase. It’s just a phase. I’ll grow out of it. 13 years later, I still have not grown out of it. As a 25-year old female, I have now officially been pulling out my hair for over half of my life.
As a preteen, I would pull it strand by strand, examine the texture, the cold, wet root. I would hide it, camouflage it into places I knew no one would look: underneath couches, on dark carpets, between the pages of textbooks. No one saw the remnants and it was my “hairy” secret. The center part on my scalp grew to the width of my thumb and I didn’t wear my hair down for the next 2 years. Friends didn’t say anything, neither did my parents. If they saw me pulling, they probably were at a loss for words.
In college I became curious about Trichotillomania. The first time I typed “I pull out my own hair” into the Google search bar in 2008, an alternate universe was revealed: definitions, anecdotes, resources, the TLC website. My mind was blown and I finally realized I was not alone.
Over the years, I continued to tell myself that my Trich was just a bad habit, that one day I would go cold turkey and just be able to give up pulling. If only it were that easy. Upon entering graduate school and various internships, my pulling increased and I recognized that being in professional setting was not conducive to overcoming the disorder. It was that moment when I realized that my Trich was real and not something I could fight myself. I sought help from a wonderful therapist in the counseling center of my graduate school and learned that asking for help doesn’t make you weak, it makes you stronger. Her specialty was anxiety but she had never worked with anyone a BFRB before: I was her introduction to the world of Trich. No pressure. We brainstormed ways to cut back on pulling and various methods of limiting urges. At this point, I feel that I have tried every tool to manage the pulling: gloves, hats, band aids, wet hair, fancy hair, fidget toys, rubber bands, rubber fingers, silly putty, bracelets, and yet I am still surprised when I hear of other methods that have worked for people. I ended up transferring therapists to a specialist at Trichotillomania Clinic at Massachusetts General Hospital and have been lucky enough to continue working on understanding how to best treat and manage my disorder.
After some amount of convincing, I went to a TLC Support Group meeting in Boston. As an individual with social anxiety, it was among the most nerve-wracking and terrifying things I have ever pushed myself to do: Blurt out my story to a bunch of random strangers? Are you nuts?! It ended up being among the best decisions I have ever made and was the first time I had ever opened up to anyone (other than two close friends) about my struggles. And let me tell you, it was incredibly liberating to see and hear other individuals who were so relatable. “You primarily pull in the car? Me too!” “You like the feel of the root against your lips? OMG same!” After my first meeting, I miraculously went on a 10-day pull-free streak: the longest of my life.
Acceptance is and remains tough for me. How can I accept something that I so desperately want to eliminate from my life? And sure, I have awesome days where urges are non-existent but other days where my hands and fingers feel like a separate entity from my body that I have absolutely no control over, like a magnetic force is driving them to my scalp. Some days I actually don’t want to stop pulling, it just feels so good. But those days pass and I have learned that Trich is something that does not just go away by closing my eyes and counting to three. It is with me for life, an annoying sidekick, and it is up to me to accept it for what it is and learn to work with it so I can continue to live my life to the fullest. And as it turns out, I have written this brief story with band aids on my thumbs and more than a few close calls.
I know my story is not unique and trich remains one of my biggest secrets. Every day is a new battle, but a battle that I am ready for and know I have to face head on.
Submitted by Jessica
Are you looking for some great books to read while enjoying the long days of summer? If you or someone you are close to has a Body-Focused Repetitive Behavior (or BFRB) like Trichotillomania or Skin Picking Disorder, pick up one of our top reads (fiction and nonfiction) that can give you more insight into these behaviors. And if reading is not your cup of tea, we’ve got some great DVDs to choose from, too (including the much anticipated documentary on Skin Picking – Scars of Shame). Click the titles below to learn more.
Project Dermatillomania: A collection of biographical essays on living with, and healing from, Skin Picking Disorder.
Life is Trichy: New! The true story of a twenty-nine-year-old lifelong perfectionist, who struggled with skin picking, nail biting, and hair pulling.
Doesn’t It Hurt? 15 contributors from around the world openly share their personal journeys with Trichotillomania
The Perfect Pull: A hopeful and empowering fiction novel for teens and adults, written by an author who has overcome trichotillomania. A great novel for people ages 11 up.
Pearls: Meditations on Recovery From BFRBs: TLC Founder Christina Pearson’s collection of meditations has many layers, and takes on new meaning with one’s own evolving experience of the path to recovery.
Skin Picking: The Freedom to Finally Stop: A guidebook for those suffering from skin picking, and for health professionals, offering truly practical advice to help you stop or reduce skin picking.
Scars of Shame: The first documentary about Skin Picking Disorder, this film tells the story of Angela Hartlin, who invites us into her world for an intimate portrait of her daily struggles as she deals with this condition.
Bad Hair Life: TLC Executive Director, Jennifer Raikes, uses art, photography and interviews with patients and clinicians in this intensely honest, first-hand account of life with Trichotillomania
Professional Training: Are you a professional who would like in-depth training in the treatments of BFRBs? This 13-hour training program offers practical CBT-based training for licensed clinicians.
What’s on your reading list? Let us know in the comments!
We are thrilled to let you know about three new support groups that have formed in Australia! Support groups are peer-organized, please contact the organizer directly for details. You might also want to take a look at closed Facebook group for people affected by trich and derm that live in Australia.
Interested in starting your own group? Click here for more info >>
Trichotillomania Support Group
First monthly meeting 11am to 1pm on 30th May.
11am-1pm Saturdays, 4th week of each month at The North Adelaide Community centre and library. Enter through the library; it opens at 11am so just wait outside if you are early. The building is adjacent to the post office on Tynte St. No cost.
Trichotillomania Support Group in Surrey Hills
This group will be a more structured style with a focus on activities and group discussions centred around common themes and shared ideas about Trichotillomania, and is another open group for all sufferers and carers to participate in a positive peer work-shopping environment. Trich/hair pullers welcome as well as family members/carers. Meets 2nd Sunday of each month, 11:00am-12:30pm.
Anxiety Recovery Centre
292 Canterbury Rd., Surrey Hills
For more information, call 03 98300533 or 13 00269438
Trichotillomania and Dermatillomania Support Group
First monthly meeting 11am to 1pm on 6th June.
City of Vincent, Library and Local History Centre, in the interview room.
Street address: 244 Vincent Street (corner of Loftus Street),
Leederville, Western Australia, 6007
Jude Stevenson is a TLC Volunteer, Research Poster Presenter, and Conference Presenter, and is currently working on her PhD at the University of Glasgow in Scotland. Jude was a recipient of TLC’s “Poster Presentation Grant Award” several years ago, which helps cover conference expenses for young researchers, enabling them to connect with our own Scientific Advisory Board and further their interest in the field of BFRB Research. The Poster Grant program seems to be working – Jude has since returned to the TLC Conference each year to share her work, volunteer, and mentor other young people affected by trichotillomania and skin picking.
Jude will be sharing her story at the upcoming TLC workshop in London, England. Let’s get to know our dear friend, Jude:
How has TLC changed your experience with BFRBs?
For me, it was amazing to come across an organization devoted to BFRBs. Before I had a name for my hair-pulling, I thought I was the only person in the world doing this to myself, and although I could not help it, it often feel like a shameful and dirty little secret. To come across a place (TLC) where people can freely chat to each other, share resources, and meet others “just like us”, is a breath of fresh air.
I feel like I’m not alone in this anymore. Although some days my hair-pulling might test my patience or get me down, I have NUMEROUS friends I can contact in an instant if I need some support, who I know will reply and will understand. For me, TLC is an extended worldwide family.
Why did you decide to study Trichotillomania?
I always knew there was the possibility that I would do a PhD one day, but I had postponed the idea because I knew that if I was going to engage in part-time study on top of a full-time university teaching job, it would have to be something that I would be passionate about. One day, at my desk, sifting through unappealing topics that I just couldn’t engage with, I opened up to a colleague (who knew I had trich) that it was my dream to study trich, but that I didn’t think it would be a possibility for me. She encouraged me to put the idea forward, so I did, and the response from my supervisor-to-be was really positive! We discussed how we could build a project utilizing my trich insights with their expertise in experimental paradigms.
I think that to study something like trichotillomania, it really does help to have experienced the conditions yourself. I am able to guide my supervisors by telling them what “makes me tick” and it’s been a really positive experience! I also lecture to more than 500 students every year, and I include a lecture on BFRBs, which goes down really well.
What is the most memorable thing about the TLC conference for you?
One word: PEOPLE!! You walk into a room of 500 people and you are instantly connected.
- When meeting fellow people with BFRBs, you don’t need to do the “getting to know you” chat; you are already connected by the condition and it’s like meeting family.
- When meeting fellow researchers, I am blown away by the sheer passion of TLC’s Scientific Advisory Board, who dedicate so much time and energy to learning more about these under-researched conditions.
- I love talking to the parents of kids and teens with BFRBs. I am so excited that this resource exists. My parents didn’t have the internet or other such resources when I had my onset at the age of 6. To see parents/loved ones coming along to learn more…it just makes me glow in side.
- The TLC staff is just amazing. They go out of their way to ensure that there is a nurturing and supportive environment, whilst delivering a very formal and educational conference.
What do you hope changes in the future for BFRBs?
I think that it’s really important to continue raising awareness. During the lectures that I give annually, I always ask the audience: “who has heard of this condition?”. Each year, the number of hands being raised, increases! How is this happening? People are starting to speak out in the media, like myself in lectures, etc. The shame and isolation of BFRBs has held many people back from “coming out”, but with support and resources, the journey is so much easier and it’s a journey that no one need make alone. As I continue to educate my students, the number of positive responses to BFRBs largely outweighs the very occasional “urgh, people do that?” For me, this is huge progress. Then, this can be paid forward. As awareness increases, so will research, as more and more people may see it as a worthy cause.
If you met a younger version of yourself (who hadn’t heard of TLC and thought they were alone), what would you say? You are not alone, step out of your comfort zone, and get involved. There is HOPE <3
Written by Mackensie Freeman, a 16 year old who is a member of TLC’s Millennial Task Force, and works to raise awareness about BFRBs in the community by speaking with national media about her experiences with BFRBs. Read her story on BuzzFeed here.
When you love someone with a BFRB*
Dr. Fred Penzel, Western Suffolk Psychological Services
*Body-Focused Repetitive Behavior (BFRB) is an umbrella term for a group of behaviors that include Dermatillomania (Skin Picking or Excoriation Disorder), Trichotillomania (Hair Pulling Disorder), and Onychophagia, (compulsive nail biting).
Having a significant other (SO) for support and encouragement can certainly be an advantage to people coping with BFRBs. No one would disagree. In the ideal world, everyone would have someone who could provide those things. In this same ideal world, everyone would understand problems of this type, and what it takes to recover from them. Unfortunately, not everyone understands BFRBs, and many sufferers are in relationships with people who not only don’t get it, but don’t get that they don’t get it. The behaviors and attitudes of these SOs create obstacles to their partner’s recovery.
BFRBs are stubborn problems with many different inputs that must all be addressed in a comprehensive way. Finding recovery takes time, hard work, motivation, and a lot of persistence; even under the best of circumstances. Most people have never heard words like BFRBS, trichotillomania or skin picking disorder. And, many of those that HAVE heard these terms still view them as some kind of “bad habit.” When significant others find themselves face-to-face with BFRBs, they now suddenly have to cope with an issue they know little or nothing about. This can lead to all kinds of difficulties. It is important to be aware of these potential problems and their possible solutions if they are to be remedied. Failure to recognize or fix them may cause relationship damage, and possibly breakups. As with many things, education is the key.
Many SOs think that along with having a relationship, they also have a special responsibility to get their loved one to do things that are good for them. This might include such things as eating properly, exercising, etc. They believe this concern shows that they are really concerned, and are taking care of the other person. Unfortunately, when they apply this to their loved one’s BFRB, things can go very wrong. They may, for instance, take on the role of being the “pulling” or “picking police.” It usually starts by the SO watching the sufferer like a hawk, and then having to alert them every time they notice them pulling or picking. They may do this by calling out to them, touching them, making a noise (finger-snapping, throat clearing, etc.), or even throwing things at them (yes, I have actually encountered this). They may even go well beyond this by grabbing their arm or hand and trying to physically restrain them. On a different level, some also use sarcasm, guilt, or anger as a way to try to get them to change their behavior.
None of us really has the power to control the behavior of another. Even if someone wants to change, it takes a lot of work. The only person you can control is yourself, so all these tactics are doomed to failure. This can then go on to create even greater and more long-lasting problems; as such failures then lead to blame, resentment, frustration, and anger. You tend to hear SOs voice all sorts of angry or guilt-provoking remarks such as, “Why can’t you just stop,” or, “I can’t stand watching you do that over and over,” or “I hate the way it makes you look,” or, “Our relationship would be perfect if it weren’t for your pulling/picking,” or “I don’t like being seen in public with you, it’s embarrassing.” In our appearance-conscious society, BFRBs can be stigmatizing disorders of shame and isolation. Sufferers frequently harbor feelings of defectiveness and freakishness. Everyone with a BFRB would dearly like to stop, if only they could. Trying to make them feel badly about themselves for having a problem such as this can only add to their burden, make them feel more demoralized, and make them feel less like being able to change. On a further note, the whole situation really isn’t about you. What might it say about you, if while your partner is suffering with their problem, the only thing you appear to be concerned about is how you look when seen with them in public. Do you fear being rejected or stigmatized by simply associating with them? Sounds pretty selfish and self-centered, doesn’t it?
Unfortunately, in our society, we only tend to have sympathy for those who appear to be doing something active to help themselves. Conversely, those who do not appear to be trying to do something about their problem are usually blamed for their ongoing difficulties. We also tend to characterize those who can’t seem to help themselves as somehow being weaker than others, and having less strength of character. BFRBs are genetically-based neurochemical problems that can be very persistent and difficult to get under control. No one asks for them, and as we said, every sufferer would like to stop what they are doing. SOs need to get it through their heads that these are real biological problems and not indications of weakness. I have always believed that people tend to rise to the level of expectation that we place on them, and that labeling someone as weak and incapable may only contribute to their feelings of being helpless and ineffective.
Treating people with BFRBs harshly can also have another bad paradoxical side-effect. One apparent function of BFRBs is to help people regulate their own nervous systems. They seem to pull and pick when overstimulated (stressed or anxious) or understimulated (bored or physically inactive). Creating emotional scenes, using criticism, anger, or shame, etc. can only create stress, and your partner will then seek to relieve this stress by further pulling and picking. If you truly want them to stop, you can see how anything besides staying out of it can only have the opposite effect.
Just because a loved one is in treatment, it doesn’t mean that potential problems still don’t exist for SOs. You aren’t responsible for making them follow their particular program. Even if you could get them to follow it perfectly when you were supervising, what would they do when you weren’t around? What matters most is what they do when they are on their own. Additionally, don’t expect therapy to go perfectly without any hitches. There are always setbacks and slip-ups – good days and bad. These are a normal part of the process. Everyone must go through them. Sometimes they teach sufferers more than the things they get right! No one learns a complex new skill without making mistakes. It is a normal part of the learning process. Each person must be allowed to learn in their own way. Your partner is no different. The best advice is to stay out of it, and allow them to find their way by themselves. At the most, you can support their efforts and be encouraging about the whole process and their need to keep working at it until they succeed.
Whatever your issues with your partner’s BFRB, one overall problem you need to beware of is becoming obsessed and over-involved in it. If this is the case, you might consider getting some counseling of your own, to help you to concentrate on living your own life, pursuing your own self-improvement goals, and allowing your partner to take responsibility for their own behavior and emotions. You can tell if you are getting in much too deeply if you note one or more the following about yourself:
- You find that your emotional state is tied to how well they are handling their problem on a given day (up when they’re doing well, and down when they aren’t).
- Thoughts about their BFRB seem to occupy your thinking more than most other topics.
- The BFRB seems to be a daily topic of conversation with your partner
- You simply cannot stop watching them when they are engaged in the behavior, and cannot resist commenting on it.
- A lot of your time is spent in researching the problem, beyond the point where you are doing anything useful
- If they are in treatment, you find that you must have constant updates on how and if they are following their therapy. If you feel they are not following it exactly, you find yourself constantly reminding and nagging them about it.
- You find yourself discussing the BFRB with everyone else who will listen.
So after reviewing all these things that don’t work, what are you, as an SO, to do when faced with your partner’s BFRB? Should you do nothing? Is that all there is?
The answer is that there are a number of do’s and don’ts that really can help. Let’s outline them:
- Stop watching your partner. If you don’t like seeing what they are doing, look away and ignore the behavior.
- Don’t be the pulling or picking police. It isn’t your job to prevent the behavior. You will not succeed no matter how hard you try. Many have tried and all have failed. Only one person can control the behavior, and it isn’t you.
- Give up the idea that you can somehow motivate them to change their behavior. Change is the sole responsibility of the person with the behavior. People only recover when they take responsibility for their own symptoms.
- Avoid the use of shame, sarcasm, anger or guilt to try to get them to change. It simply cannot and will not work. It will cause a lot of resentment and other bad feelings that can only damage your relationship. Also, the stress will likely only lead to an increase in pulling and picking.
- Don’t blame them for having the problem. It’s not their fault. As was mentioned, this is a biological problem, and not some kind of weakness. They would gladly stop if they could.
- Don’t make comments on their appearance. Anything you say about it just won’t help. If they are in treatment, youcan encourage them if they seem discouraged. Tell them that they will make it if they keep working at it.
- Resist the urge to discuss it with numerous other people – they can’t help, and it isn’t their concern. You will also be guarding your loved one’s privacy.
- If they are in treatment and are making some progress, don’t point out the things they are still unsuccessful with. You will otherwise risk damaging their motivation.
- If they are in treatment, don’t expect things to always go perfectly. Recovery is generally not a smooth process, and slip-ups and setbacks are so common that therapists have learned to expect them.
- Don’t be the therapy police. Don’t remind them or nag them to do their homework. If they aren’t motivated to do it on their own, your efforts won’t be able to make up for it.
- Do be supportive of their efforts to help themselves, and be encouraging about the importance of persistence – even when things don’t seem to be going very well.
- Busy yourself with your own life goals and put your efforts into them. This is where you can make a real difference in life, and do something that may actually improve your relationship.
A lot of us go forth in life with the naïve idea that we will eventually find the perfect job, partner, child, home, etc. Life, of course, teaches us that such is not the case. When they discover that their partner has a particular problem, they view it as something that just shouldn’t exist for them. After all, they demand angrily, “This wasn’t the way things were supposed to be.” Holding on to ideas such as this this creates feelings of anger and resentment; as if they were somehow cheated of something that was rightfully theirs. Feeling entitled to not having problems or imperfections in life is a very irrational idea. Seeing your partner with bald or thin spots on their head, missing eyebrows, or scarred skin may be a reminder of this fact of life, and also that it might be a good idea to challenge your notions of entitlement. In the end, you do not have to like the fact that your partner didn’t turn out to be the perfect human being with pristine hair and skin, but you may have to accept that you are in a relationship with a real, flesh-and-blood, imperfect human being. Remember that your partner may also be working to accept certain things about you as well, as you are also unlikely to be a perfect being either. Peace of mind and a good relationship can be the result of accepting things we cannot change.
Another important point in making any relationship work, is that along with accepting your partner’s imperfections, it is important that you learn to accept them unconditionally, in their entirely – imperfections and all. If you focus in exclusively on this BFRB-related behavior you don’t like, you risk reducing them to just one small facet of who they really are. People are made up of thousands of different abilities, qualities, dreams, beliefs, and acts. To ignore everything else about them is to risk shutting out all their good qualities, and all the things that attracted you to begin with.
Dr. Fred Penzel is a licensed psychologist who has specialized in the treatment of Trichotillomania and OCD since 1982. He is the Executive Director of Western Suffolk Psychological Services in Huntington, Long Island, New York, a private treatment group specializing in BFRBs and O-C related problems, and is a founding member of the TLC Science Advisory Board. Dr. Penzel is the author of “The Hair Pulling Problem,” a self-help book dedicated exclusively to trich, as well as “Obsessive-Compulsive Disorders: A Complete Guide To Getting Well And Staying Well,” a self-help work covering TTM and other O-C spectrum disorders. Dr. Penzel is also a frequent contributor to TLC’s newsletter In Touch.
A Perspective on Trichotillomania
By Audrey DiEnno
My Trich is the direct result of a brain trauma from a car accident when I was 22 (I’m 30 now). My pulling is 99% subconscious (I do it while I sleep, that’s how little control I have over it). Upon being diagnosed, I found out that my BEST friend in the world has been dealing with Trich since she was 9….and I had no idea until I opened up to her about mine.
That moment changed my life forever, and I’ve never hesitated to talk about trichotillomania since. Since I am a nurse, I dove head first into learning EVERYTHING I could about TTM and started telling anyone and everyone who would listen about it. My only hope was to help at least ONE other Trichster feel less ashamed, or educate a non-Trichster eyes so that they wouldn’t stare or accidentally ask an embarrassing question. Now, 8 years later, I give lectures to medical students and help run several Trich-related groups. I’ve been told by many people that I’ve changed their lives for the better…there is NO better feeling in the world.
My attitude towards our disorder is unique and maybe even a little irreverent. I tried EVERYTHING under the sun recommended to “treat” Trich but to no avail. It was then that I realized that I better get comfy REAL fast or else I was in for a miserable life. That’s not to say that having trichotillomania doesn’t occasionally make me upset (I’m only human) but here’s my thought process: life could be WAY worse for me! The things I’ve seen in the clinics I’ve worked in, have given me the perspective to love every second of every day and to appreciate that my biggest “problem” is that I pull my hair out uncontrollably. Besides, I look better in wigs anyway! So I take my philosophy and wear it proudly because I know that it helps the people I meet change the way they feel about their Trich.
I do emphasize that this is MY philosophy, and not everyone’s cup of tea. I’m aware and ok with the fact that not everyone will agree with my approach of acceptance, and that’s fine with me – it’s all about what works for each of us, right?
Audrey is a member of the Camden County, NJ Trichotillomania / BFRB Support Group. They meet the 2nd Wednesday of every month at 7pm at Grace Church in Oaklyn, NJ.
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