Rookie Researcher : The Obstacles
Anybody can have an Eureka moment – heck, if I had a nickel for every half-baked concoction of mine, I’d have a trust. Some say there’s a link between creativity and mental illness, and for the short while I’ve been immersed in the TLC community, I believe it! I’ve known actors, artists, photographers, writers, musicians, vloggers (our modern storytellers), the list goes on, who pick and pull. Do we flourish creatively because of our BFRB’s, or do our habits arise from the expression of hyperactive hands and eyes that are meant to be molding ideas? We may never know. All I know is that the majority of half-baked ideas burn to a crisp; ideas are worth little unless acted upon. So once I had my Eureka moment, I meant to actually implement it…but I learned quickly that this process is hard, even harder when dealing with something as mysterious as TTM.
The first thing was the paperwork. The Eureka moment happened in July, and our first participant wasn’t run until late January. The initial protocol was unlike anything I’d ever seen…they wanted every detail, details that I didn’t even know yet! I had no idea what half the questions even meant, which entailed a lengthy talk with my adviser during syllabus week while both of us were still in summer mode. If it sounds like it felt akin to pulling teeth, then I left the office that day with sore gums and a lot of marks made in red pen…
Oh, then there were the appendices that needed to be attached! I have a feeling they are called appendices because they’re virtually useless and I badly wanted them removed (actually, they were far from vestigial, but that didn’t stop them from being totally annoying). Consent forms, recruitment flyers, more scripts than if I were writing a play, they all had to be created from scratch or borrowed from someone who actually knew what they were doing. Then I submitted it all, wondered when I would finally get to start the fun stuff, heard back a month later with about a dozen major modifications, and effectively lost all hope.
Actually, the long delay before my study’s approval was partially my fault because I never really learned math, I think I’d just faked it since the second grade. You see, standard rules of compensation hold that a participant gets paid around $0.05 for every minute they are in an experiment. For a 90 minute experiment, that amounts to four and a half buckaroos…how I calculated that I’d need to pay each subject $45 still makes me scratch my head. What was so fabulous about this whale of a mistake was that only the IRB (the approval board) caught it, even though it had been shown to my adviser, my whole team, my mother (who was a math major), and a grant committee that gave me a thousand dollars with that figure in the budget. I still can’t help but laugh when I’m reminded of my big giant gaffe. Unfortunately, word got around, and they’re making me go back and repeat the second grade.
On a more serious note, another thing you must learn if you want to research BFRBs is to make do with what you’ve got. Unless you are very, very lucky, chances are your adviser or mentor will know very little about BFRBs. My university doesn’t have a single professor specialized in anxiety or OCD, let alone TTM. My adviser’s specialty was cognitive modeling, worlds away from TTM, but I included a cognitive component in my experiment especially so I could capitalize on his expertise. I annotated several of his papers to oblivion, and after a while, he started sending me papers he stumbled across about executive function in the OCD spectrum. Research consists of one learning experience after another; every researcher has something to contribute if you only look hard enough. I still run the risk of not being taken seriously by not properly collaborating with a TTM expert, but stepping outside my niche remains one of the best decisions I made for the study.
So that’s how I spent the 6 months between my Eureka moment and my ‘holy-sh*t-this-is-really-happening’ moment: shuffling through mountains of paperwork, becoming an overnight expert in cognitive psychology, and mostly bumbling around without a clue. There are going to be obstacles at every step of the way, so like a chess master, you must be three steps ahead at all times. Foreseeing the problem that might never exist will save a lot of trouble in the end. Ask a lot of questions, seek out people who might know a thing or two, be patient, be realistic, be open-minded, all that jazz. Mastering the prep work will make the fun stuff that much more magnificent.
Oh, and one more thing: always double-check your arithmetic.
Kimi Skokin is a recent graduate of Syracuse University, studying psychology and neuroscience. She attended her first TLC conference in 2015, both as a puller/picker and as a student researcher. Her interests include Hello Kitty, Kurt Vonnegut, and teaching her peers how to pronounce trichotillomania.
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Rookie Researcher is an 8-part serial on what it’s like to do research on trichotillomania while also being a regular college kid who struggles with trichotillomania.
By Kimi Skokin
The truism my first psychology teacher used to sell me on what is now my career path was this : “psychology is EVERYTHING.” It’s an art and yet a science, theoretical and yet practical, individual and yet social. The brain is the seat of what makes us human, the champion of evolution, and simultaneously the source of all, sometimes egregious, human error.
Similarly, research is equal parts empirical and creative, at the same time requiring fastidiousness and passion. When I first started college, under the impression that my psychology education would be more liberal arts-y in nature, all the systematic and stiff rules of experimental design bored me to tears. It wasn’t until my first research experience that I actually appreciated how much thought goes into a research study. Each seemingly standardized tenet becomes a subjective judgment call, and each seemingly meaningless detail, like what kind of folders you’re using or extraneous commas in your analysis code, makes a world of difference.
When I set out to start my own research study in July of last year, I knew all this, to some degree. Until that point I had presented some posters, scheduled some participants, tried my hand at coding, and thought I knew everything there was to know (boy, was I wrong).
One of the things that nobody told me, from the jump, was that an ‘idea’ for a research study is not actually an idea proper. It’s actually more of a Frankenstein’s monster of dozens of smaller, half-baked ideas. The only thing I knew for sure was that I wanted to study TTM, because I was just starting to come out to my peers about my condition, and so few people knew anything about it that I knew it would get people’s attention.
So TTM was my jump-off point. The next conclusion I came to was that by comparing TTM to a better-known disorder in some way, I could get some relative answers. The question then became which one, because TTM could co-occur with just about anything – depression, anxiety, PTSD, eating disorders, bipolar, OCD, other BFRB’s…and then I remembered that TTM wasn’t classified where it had been a year prior. I wondered what were the arguments for and against changing the location, and I tried to exhume my own opinion. As someone with more than one fixed pulling style (as most of us are), I could make a case for TTM as an impulse-control disorder given how often pulling feels out of my control, and on the other hand, I could also make a case for TTM as an OCD spectrum disorder because of how often it feels like a ritual to get the kinks out of my hair (even though I’ve stopped pulling, I still find myself cutting the kinks out of my naturally curly hair with scissors sometimes).
Fun fact : even after seeing the preliminary results, I’m still just as confused about where TTM belongs as I was last July. And at the TLC conference this year, one of the researchers I met who had a hand in the classification change said that ‘no one was completely happy with where it was, and no one is completely happy with where it is now’, so I’m not the only one.
I had a good start – a quandary that still baffles me and the scientific community to this day. And I knew of some self-report measures from the clinic I was volunteering at that I could use. And my adviser told me about some cognitive tests that he already had codes for (including one test that had never been used on people with TTM before). And I had old notes from my Research Methods and Stats courses on how to carry all this out. And I started finding papers where people much smarter than myself were talking about the same thing in loftier terms.
After some time, all these mini realizations snowballed into something that started to sound coherent. I’d stitched and stapled my monster of an idea together with all the bells and whistles, and lo and behold, it was actually viable!
Kimi Skokin is a recent graduate of Syracuse University, studying psychology and neuroscience. She attended her first TLC conference in 2015, both as a puller/picker and as a student researcher. Her interests include Hello Kitty, Kurt Vonnegut, and teaching her peers how to pronounce trichotillomania.
1. How did you first hear about TLC?
I found TLC on the internet after I googled ‘trichotillomania’ in February 2014. I had reached a point in my life where I was desperate and had tried everything within my power that was available to me in the UK. Prior to that I attended a 12 step fellowship meeting for people suffering with OCD. It was called ‘obsessive compulsive anonymous’. I went every week for about 4 years. It was amazing and I learned loads, but I felt like something was lacking, like I needed help specific to trich. I was at the lowest point of my life after having had my second child, suffering with post-natal depression and trich, which I have had since I was 13. After finding TLC online, I made one call and they were so helpful and kind. I knew I wasn’t alone, I then decided to the attend my first conference in LA. It was a big gamble as it was so far away and I used all my savings – but I’m so glad I went – and honestly, the first conference was priceless.
2. How has having trich affected your life?
It has had a massive impact on my life, I have had trich since I was about 13 and my family and I have all suffered. I didn’t know why I was doing it and had no words to express how I felt. My family was frustrated and upset at seeing me pull my hair out and I didn’t know what to do or what to say to them. I didn’t have any answers and neither did they. There was a lot of hostility in our household and my experiences as a child have shaped the person I am today and that is difficult to unlearn. It has taken me years and years to stop the self-loathing and beating myself up after a setback, and to be honest I never thought I would get there but now I can finally say if I have a setback, I forgive myself and move on. It’s very liberating! Now trich affects my life in a positive way, today I met someone at the hair salon I regularly go to and I was able to tell her about the UK workshop and speak openly about trich and pass on some hope and positivity. Where there is suffering, there is also an opportunity to grow and learn and I am so grateful for that!
3. TLC just had its first ever TLC Workshop in the UK in June! What was your role there? Are you glad TLC is spreading out to places like the UK?
I am SO glad TLC is going international!! Ever since I attended my first conference in LA I had a vision of TLC being in the UK and I was so glad Leslie (TLC’s Program Manager) got in contact to with me! I am really proud to be British and I believe that the UK needs TLC to raise awareness and help educate people. My role there was to make sure the day ran smoothly and liaise with the University where it was held, as well as speak on a panel of TLC ambassadors. I also loved meeting people and making people feel welcome. It’s an emotional thing attending a conference/workshop, and as this was the first one I knew people attending would be apprehensive as to what to expect. The good news is that some attendees had approached me on the online Facebook group prior to the workshop, so they had a face and a name which would be familiar. I had also organised for a trich specific hair salon to sponsor and exhibit which was great news! I have used them many times and they have a lot of clients who have trich. If TLC does another workshop in London I would say one of my roles would be to get more clinicians in and get some UK doctors to present if I can. I have a good friend who is a clinical psychologist and I would love to have her present on different treatments in the UK.
4. Why do you think BFRB awareness is so important?
For so many important reasons. Too many to list! To end suffering, isolation and fear of so many people all around the world. BFRBs are non-discriminatory so they affect all races, age, sex, background, religion – that’s a whole lot of people in the world still suffering! Many of them still think they are the only one. And many people don’t even know what BFRBs are. The more people talk, the more people become educated and the more people feel less alone. That is a powerful thing.
5. What advice would you give to your teenage self-struggling with trich?
The single most important thing I would say to my teenage self would be to be kind to yourself. Find a word to express how you feel and try to learn to forgive yourself for those setbacks. What would you say to a friend going through a hard time or if you saw a child falling off a bike? You are the most important person in your life so treat yourself with love. I always say to my 2 girls that beauty comes from within and it’s not about whether they wear a certain dress or have their hair a certain way, it’s about how they feel about themselves and whether they are kind people. The fact that you are coping is a credit to your bravery and strength.
6. How have things changed since you came out about trich last year?
Massively!! I was so tired of hiding, I was so shameful and there were so many secrets. But you know what they say, you are only as sick as your secrets. Since I came out about trich I feel lighter, more empowered, stronger, determined, happier and very liberated!!! I have come a long way in such a short space of time! Thank you TLC! xx
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.
On a weekly basis I hear the phrase, “I’m so angry/annoyed/frustrated I’m going to pull my hair out!” Well for the majority of us who read this Blog that phrase is no joke. For more than half of my life I have been struggling with Trichotillomania (Trich). In my case, I have a very strong desire to pull out my head hair and eyebrows and to touch my face incessantly and pull out any little hairs that I may find in the process. My Trich episodes occur almost exclusively when I am doing something that I am frustrated with, something that is boring or if I am sedentary for too long. I know that one of the primary reasons that there is so little research on Trich is because people who have Trich feel ashamed of what they do to themselves, I know I did for a long time, and so us Trichsters need to band together, tell our stories, continue to seek help and realize that Trich is nothing we should be ashamed of, no matter to what degree we pull or from where on our body we pull.
Despite my ups and downs with this disorder, I consider myself a very fortunate Trichster for many reasons, some of which are: 1) I have a very loving and supportive family and group of friends who recognize that Trich is an actual disorder (many people never get the help they need because their “support” system thinks they should just be able to stop pulling/picking and they don’t understand why someone would pull out his/her hair) and because of my support system I have been encouraged (and sometimes forced) to see various doctors, seek different treatments and continue to explore different methods, 2) I have more hair than I know what to do with and even when my Trich has been at its worst I have always been able to put my hair up in a ponytail at the very least, 3) I have the financial means to pay to see an amazing doctor (Dr. Suzanne Feinstein), who I found through the TLC website, and 4) I live in one of the world’s greatest cities (NYC!) which gives me access to resources such as the aforementioned amazing doctor.
I have been working with Dr. F. for about two years now and I have not pulled out any head hair in over two years. Not pulling/touching my eyebrows and face continues to be a struggle for me, but it’s something I work on every day. In “Bad Hair Life”, the director (Jennifer Raikes) ends the movie by saying she prays for a day of quiet hands and I could not agree more. I know I still have my work cut out for me, but I have quiet hands in sight.
Here is a list of techniques I’ve been employing and that have been really helping, some more than others. Hopefully they can help you, too!
- Charting – this is so annoying, but it’s very useful. Anytime I pick/pull I am supposed to write it down (some days I am better at this than others). My doctor asks that I keep track of what activity I was doing when the pulling occurred, what I was thinking, how long the pulling/picking lasted for, what the position of my arms were and if I was using any of the tools during this time. Some people keep a notebook, others have a form chart that they use. I have found it best for me to email/text myself whenever it happens and then the night before my doctor’s appointment I re-write everything into a more legible list. This is good for me because it sort of reinforces what happened throughout the week and which tools were good for me (or whether or not I was using the tools). It’s really annoying to do (even if it doesn’t seem like it would be), but it’s very effective. Plus, while I’m picking at my face, I know that I really need to stop to record the episode, which is helpful in its own way.
- Rubbing hands on bottom of shoes (or anything else that makes your hands really dirty) – this works for me when I remember to do it, but not all the time. If you can set some sort of timer that goes off every 30 minutes to remind you to re-dirty your hands that works well. It sounds gross and it is, but then you also don’t want those dirty hands on your face.
- Oil-based substance – I keep a bottle of baby oil (lotion works too) on my desk at work and by my computer at home. It definitely makes things a bit messy, but this works really well. Make sure to have a towel close by so you can wipe your hands off when necessary.
- Post-it on chair – I keep a post-it note on my chair in the office and at home. The post-it just says “Reminder” and it serves as a reminder for me to actually use my tools. I like that it’s on my chair (especially in my office) so I see it whenever I come back to my desk.
- Scarf – I keep a scarf draped on the back of my chairs and wrap it around my neck while I’m working. It’s helpful because if I feel my hands going up towards my face then I try to grab onto the scarf instead and play with that for a bit (this is also known as a competing response in CBT lingo).
- Swiss ball – Instead of sitting on a chair at work, sit on a swiss ball. Not only is it better for your posture and your abs, but you have to concentrate a bit more on your balance and if your hands are constantly wandering, then you’ll notice a shift in your balance on the ball.
- Ace bandages – wrap an ace bandage around your elbow. This causes tension when you try to bend your arm to pick at your face. I haven’t used this tool yet.
- Band-aids/medical tape on fingers – this is very useful when I do it, but it’s annoying to put coverings on my fingers and then take them off if I’m going into a meeting. This is usually very helpful if I’m working from home or late at night and I’m just sitting at my desk and know I won’t be around people for a while. Also good while at home and reading/watching TV and don’t care what I look like.
- Finger cots – order these on Amazon (they’re a pain to try to find in the store). These are basically finger condoms and work very well, especially since you can use your phone through the cots.
- Gloves – wearing gloves when possible. I don’t do this much, but I’m going to make more of an effort while I’m at home and watching TV.
- Ink pad/marker – inking up your hands/marking them up is extremely effective because then obviously you don’t want to touch your face. This really only works if you’re not around people and you don’t care if you touch other things that may get the ink on them.
- Stress ball/toy – I keep 2-3 toys (things that you can squeeze, pull at) on my desk. If I’m reading something or on the phone or any time that I think I may get distracted and my hands can wander easily, then I try to keep one of those toys in my hands or lap so I can play with that and be mindful of my hands. (The TLC Store has a bunch!)
- Hats – wearing a hat, whenever possible (especially while at home) – it protects me from pulling at my head hair, but also if I find my hands wandering up towards my face, then I can also hold on to the brim of the hat. I wear a hat at home a lot of the time if I’m doing work from there, but I’m also going to start keeping a hat at work for times that I’m in the office late and can wear one at that time too.
- Light out/dim in the bathroom – unless I need the lights on in the bathroom, I try to keep them off or as dim as possible. By doing this I’m discouraging myself from looking in the mirror and going to town on my face with tweezers or my fingers.
- Gloves with lotion – they have these great gloves that you can buy at any lotion/spa place where you put a ton of lotion on your hands and then the gloves over. These makes your hands super soft and are fun to use, very good tool to use at home while watching TV/reading.
- Vaseline on face – I use Aquaphor on my face when I’m at home. This is extremely effective (albeit messy). I have very sensitive skin and the Aquaphor has never caused any issues (in fact, I think it’s made my skin smoother).
- Arm length from the mirror – when putting on make-up or doing anything else (especially in a dressing room with those crazy lights) try to keep your distance from the mirror. It’s very helpful.
- Sit/stand desk – I have been working with a sit/stand desk (a desk that you can sit or stand at) for the past few weeks and this seems to be very helpful. I tend to pull most often when I’m sedentary so this is a nice change.
- Getting nails done – I have found that I am less likely to pull or pick when my nails are done because I don’t want to mess up the manicure.
- Cutting nails short – I try to keep my nails as short as possible, it makes pulling more difficult.
- Saving pulled out eyebrow hairs – whenever I pull out eyebrow hairs, if I can remember then I try to save them and tape them to a piece of paper that I keep on my desk. I get really mad at seeing the hairs that I have pulled out and it encourages me not to pull out further hairs.
Submitted by Simone, New York, NY
The TLC conference is a time for people to make new friends, see old ones, and learn about BFRBs at the same time. One teen in particular, Gessie, a 16 year old from New York, was so inspired by the conference that she’s now determined to help raise awareness about BFRBs. Learn more about Gessie and her first TLC experience below.
1. How did you hear about TLC?
Well, I first started pulling my hair at 11 years old, and my mom learned that there was a name for what I was doing: Trichotillomania. However, it wasn’t until about two years (when I was 14) that the pulling really started to have an impact on my life. So, I started to do some research online to find out as much information as I could about trich. In doing so, I found out about TLC, and I was amazed that there was an organization out there to help people like me.
2. What were you anticipating the conference to be like? Were you nervous?
When I first found out about TLC is when I also found out about the annual conference. My mom and I both thought it would be a great opportunity and we planned on eventually going… Someday. When my mom told me that she registered for us to finally go this year, I was beyond excited. I’ve heard nothing but great things about the conference, but I wondered what it would actually be like for me. I hoped to learn more ways for dealing with my trich, for my mom to get some more understanding of what I’m going through, and most of all to meet other people with my disorder for the first time. Though, as the conference grew closer, I did start to feel very nervous. I’ll admit I’m usually quite reserved and it’s hard for me to feel comfortable being myself with most people. I tried reassuring myself that everyone there would completely understand me.
3. What was your conference experience like? Did you have fun?
The day of the conference came and I still felt nervous, but I guess that’s normal with any unfamiliar, new experience. The first workshop was very educational and I enjoyed it. After that, during the evening reception, I tried to push myself to go up and talk to some new people. I did just that and I was proud of myself for going outside of my comfort zone. All throughout the second day, I met more and more people. I’ve talked to other people with trich before in groups online, but never really in person. So to go from not knowing anyone else with my disorder, to then being in a room full of hundreds of other people who’ve been through the exact same things that I have… Well it was overwhelming, overjoying, and surreal all at the same time. I’ve felt alone in my struggles with trich for a long time. But at the conference, I could finally feel like I could be myself, I could talk about my trich without fearing judgement or misunderstanding, and there was no need to hide myself. It was like a big family and we all just got each other. I made so many friends, even more than I expected myself to. Such deep connections are made in such a short amount of time. By the closing of the conference, I forgot about how nervous I felt in the beginning, and I never wanted it to end and have to leave all the amazing people I met! All in all, I had the best time of my life and it’s an experience I’ll never forget.
4. What did you learn at the conference? Did you learn any new strategies?
All of the workshops I went to were really good and I learned a lot even just by talking to other people with trich. I bought a lot of new fidget toys to keep my hands busy. I had some already, but never really used them consistently. Since the conference, I’ve been motivated to use them more regularly. I’m happy to say that I use them almost everyday now during times when I know that I’m more prone to pulling, such as when I’m in my room by myself. I’ve made it a habit to use them to try to prevent myself from pulling in the the first place, rather than try to stop myself when I’m already in the middle of pulling. I also learned to find other activities that I enjoy to keep myself busy. It’s important to practice self-care and focus on things that we like about ourselves, so that we won’t be so focused on the negative effects of our BFRBs. My mom also learned a lot about how she can help me, and she is so much more understanding and accepting now. I’ve realized that it’s just as hard for parents as it is for kids. I feel like the conference really strengthened our relationship even more, and I’m so thankful for her support.
5. Would you recommend attending the conference? Who would you recommend it to? Would you attend it again?
Definitely. I would recommend it to anyone with a BFRB, as well as parents of children with BFRBs, mental health professionals, and really anyone who has an interest in learning more about BFRBs. I’ve heard people before call the conference “life changing”. Now having experienced it myself, I can surely say that there’s no better way to describe it because that’s the impact that it had on my mom and I. I would love to attend it again.
6. Do you feel better about your trich having attended the conference?
Absolutely. I feel a great sense of hope now. I’m no longer suffering in silence or lost and in the dark. I don’t have to do this alone anymore, because now I’m part of a community, which is something I never had before. I know that if I’m going through a rough patch with my trich, or even just want to share the good moments, I have so many people that I can go to talk to. I was really inspired by hearing other people’s stories of times that they did not let their disorder hold them back. I think that that’s really important when you have a BFRB: realizing that it doesn’t define you. I’m coming to a place of loving and accepting myself no matter how much hair I have (or don’t have).
7. Do you have any advice to share from your experience?
If you are attending the conference for the first time, it’s okay to be nervous. When you actually get there, your nerves will subside. Even if you’re more introverted like me, you’ll still make friends because everyone there totally understands you. It’s good to push yourself out of your comfort zone a little bit to talk to people, you’ll be glad that you did! Just be yourself and have fun!
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.
Let’s stand strong together!
BFRB activist “Jersey” Christina Hammell invites you to the 2nd Annual New jersey Walk for BFRB / trich Awareness in Camden County, New Jersey!
Thank you for your support!
PS: Want to hold your own event like Christina’s?