Picking Me Foundation Founder and CEO Discusses Significance of Dermatillomania Awareness in Dermatology

Each year, October 1 through 7 is Body-Focused Repetitive Behaviors (BFRB) Awareness Week. One such BFRB, dermatillomania, also known as skin picking disorder, is a condition affecting patients psychologically and cutaneously.

Lauren McKeaney is the founder and CEO of the Picking Me Foundation, a nonprofit organization dedicated to supporting patients with dermatillomania while spreading awareness and education on a global scale.

McKeaney spoke with Dermatology Times® to discuss the significance of bringing awareness to dermatillomania, including ways those in the dermatology space can optimize care for this important patient population.

Transcript

Lauren McKeaney: My name is Lauren McKeaney. I'm from Chicago, and I'm the founder and CEO of the Picking Me Foundation, the only nonprofit dedicated to dermatillomania worldwide.

So my experience with dermatillomania has been quite a journey. I'm someone who has been picking since I was about 5 years old. I never knew quite what I was doing, why I was doing it, or how to stop. I really was struggling with countless sores on me daily from that young age. Growing up, it led to my parents taking me to see professionals, doctors, psychiatrists, dermatologists, really anyone they could get their hands on to help me stop what I didn't mean to be doing. At this time, we didn't know that there was a name for it. Dermatillomania has only been diagnosable since 2013, so in the early 90s, there wasn't much awareness about what I was struggling with and why it was showing up the way it did.

So my experience with professionals, even with dermatologists, sometimes looked like them just telling me, "Oh, stop picking," "You gotta stop picking," or "She'll grow out of this." Sometimes, I'd be too embarrassed or ashamed to show all my picking areas to dermatologists; I might kind of coast through the appointment without having to, but not really getting help that I might have been able to at that moment, too, so also thwarted by that kind of shame that we carry as skin pickers. It really followed me growing up to through high school. I was misdiagnosed as self-harming: something that's often confused with skin picking, but very much different, a different mental illness. College counselors, someone in college, reported that I was a meth user, which was also incorrect, but due to the appearance of my skin. I I had countless infections, abscesses, cellulitis, and again, this is all before, this is in 2 decades of time, without anyone knowing the word excoriation disorder or skin picking disorder, or as it's colloquially known, dermatillomania.

One time in 2014, I was in the hospital for picking an area of my upper thigh just as I'd done many times before. But this time, I contracted the life-taking bacteria MRSA, and I had to talk to doctors about potentially losing my leg from this. I mean, the amount of shame and embarrassment I felt through this process, through this week of hospitalization, having 8 inches of my leg taken out, a wound VAC put in, and ultimately, surviving the experience, but feeling really deflated and defeated for what I thought I had done to myself. But it was there that I learned the word dermatillomania, and I kind of had this new urge, this new impulse, if you will, and it was to share, and to share about it, and to spread awareness. It was actually in leaving the hospital: I was on a walker, and I had a wheelchair too, but I was on the walker, and somebody had asked me, 'What happened to your leg?' And I actually had something to say. I could say, 'Oh, I have dermatillomania.' And it felt awesome to be armed with something like that and to offer something to say, that I had it and it didn't have me. I wanted that feeling and that experience for anyone who might be going through what I went through. That led to the start of the Picking Me Foundation, which has been established since 2016, and we're going strong to this day.

Dermatology Times: What is the Picking Me Foundation, and how does it work with and educate dermatologists?

McKeaney: The picking me foundation is like made dedicated to all things skin picking disorder, and it's really about choosing yourself over the illness that chose you: so picking me over picking me, or skin picking. It's really in that changing the connotation of the word "pick" and taking it back that I started sharing with the hashtag that experience on social media, and more people raised their hands and said "Oh my gosh, I do this too," or, "I didn't know this was a thing," or, "My cousin does this." The community snowballed, if you will. I didn't set out to start a nonprofit, but once we all got together and formed, it really showed what we were meant to do, and that's run our support group, which is the first online skin picking support group that started in March of 2020, and we've seen over 3,500 attendees. That's not members; that's attendance, come and share their stories, talk about why we had black bedsheets growing up because we were embarrassed to bleed in our sleep, or why we never participated in gym class because we had to wear shorts and didn't want anyone to see our sores on our legs. It's just amazing to connect and hear the thoughts that you thought you only thought said by someone else. I still get chills every Tuesday that we hold these groups. The support group is definitely one of my favorite initiatives of the Picking Me Foundation, but we really do try to have you fully covered, no pun here.

We offer management tips that help dermatologists work with skin pickers. For instance, we started going door-to-door to dermatology centers, bringing fidgets and nail files and tools that we use to keep our skin picking manageable, and offering flyers pamphlets because sometimes, just having that awareness in the place where you're seeking treatment is super helpful in feeling validated and heard and seen.

We have pledges, virtual hangouts, we have an online art gallery that we use if it's hard to talk about it, because for a lot of us, this is such a shameful and hard disorder to speak on. So if it's hard to talk about it, let's draw about it, and we have a collection of over 400 artworks online depicting what dermatillomania feels like. Highly recommend checking that out. It's amazing going through that.

And, of course, our fiddle pack project where we make and sell fiddle packs full of different fidgets and sensory items that we've gotten into the first BFRB center that we helped establish and Gambia, for instance. We're really out there we're trying to foster this community, this deserving, misunderstood, underreported, worthy of love community that I'm hoping to help all live the life they deserve to live.

Dermatology Times: What is the importance of dermatillomania awareness, particularly among dermatology professionals?

McKeaney: With skin picking disorder, everyone's picked something, and with skin picking and those that suffer from it, we tend to really pick everything, and it becomes this way to self regulate and keep things kind of at a just right state. In us realizing that at Picking Me and honing ways to help offer that through dermatology practices, we've realized starting with something like an intake form having skin picking disorder, right there with psoriasis, rosacea, other skin illnesses that people are seeking treatment for, it really helps in spreading awareness, which is the whole point behind BFRB week in general.

But also for BFRB week, I would suggest sending email blasts, making it known that your establishment is a skin picking friendly zone, that you are familiar with the disorder and the criteria that it takes to diagnose skin picking. There are 4 elements that it takes to diagnose skin picking disorder, they are:

• Recurrent skin picking
• The inability to stop skin picking
• The skin picking not being caused by another mental illness
• And it not being self harm.

The familiarity with that would with dermatologists would be so amazing and to know to point people towards support groups, that there are resources out there, and also that the goal doesn't have to be pick-free. Sometimes what I've found is, specially even with me and my experience, I wanted to stop picking for so long, and I failed at that. But when I made my goal much more bite-sized and these mini goals of, to pick less or not pick a certain spot or an area, I was able to slowly achieve that and build those muscles and kind of live in that progress, which is what I want to hope and help dermatologists offer as well, ways to pick less.

That could look like suggesting acrylics or fake nails as kind of a blocker or a barrier to make picking hard. Icing trigger spots, ice rolling or ice cubes on scalp-picked sores or wherever someone's picking. When you see your client, asking them to undress, offering a gown, even if they're only there to see or talk about that one area, we might have a couple others that we're just not showing at the moment that we need a little extra help in letting know that are there leaving the door ajar. I used to be in dermatology offices, and when I would be left alone in these bright white, well-lit rooms with the door closed and huge mirrors, I would end up picking in the dermatologist's office. One that I talked to, we kind of created this understanding that the door would be a little left ajar for me when she left the room. It was wonderful, and it did help me out in even just seeing her more.

I would add, for just a little bit about what I'd say for BFRB week in general, ways to get involved would be to familiarize yourself with this disorder. Check out and follow accounts on social media, have your practice follow accounts on social media that are skin positive, Picking Me, other accounts that are familiar with BFRBs, to help show your clients that you stand for this and are taking part in educating yourself as well.

Offering to set up in-house workshops. If you ever want to have any speakers from Picking Me come, we're always open to doing that as well. We even do virtual meetups and virtual mini cons with estheticians associations, skin care and beauty and wellness facilities, and would love to work with more dermatologists on doing so. So BFRB week is a great time to reach out, connect, spread awareness, and show your community that you are taking steps to help inclusivity with this illness.

For treatment in general, a couple more tips to offer for how we suggest working with skin pickers, is again making it more about picking less, not stopping picking because what you can offer is that the suffering can stop. It might not be that the picking will stop, but the suffering can, and that's really game-changing to hear. It's so important for dermatologists to know about dermatillomania because they are often the first responders to skin pickers. This is a disorder that shows up on the skin. Yes, it's a mental illness and classified as a body-focused repetitive behavior and obsessive compulsive- related disorder, but as it presents on the skin, I was at skin doctors my whole life. I wasn't taken to a psychiatrist until much, much later. As the ones who are meeting us first, seeing the skin pickers first, seeing our wounds or sores or lesions compulsively, knowing that they can offer more than, "Stop picking," would really, really help our community, and I believe that this BFRB week, especially, is a great chance to do so.

Something that I think would be great for dermatologists to offer their skin picking patients would be the understanding that picking may happen, and if it's going to happen, what are ways we can work with harm reduction, and helping it happen in the best way possible? And also with aftercare. So what that could look like is talking with your skin picker about if they're prone to pick when they're studying or working. Maybe we make a new habit before they open that book. They wash their hands so that when they're opening that book, and that hand is getting a little noisy and starting to scan and wandering, even though you're not telling it to, it's not doing so with dirty fingers on your skin, spreading bacteria, creating something then, more to pick at. So working on things like harm reduction, like washing hands before picking prone environments, is super helpful.

Also offering to use occlusives or anything that kind of keeps you slippery is big for our community. Making the skin harder to grab is something I would suggest, as well as if you are offering topicals to treat certain ways that the skin might be affected, doing application with a brush is a great way to help us keep our fingers off our body because we're already trying to do that. I remember one time when I was given some acne cream, and the doctor wanted me to just put it on anytime I felt something, and dab it, and I couldn't fathom that. It was so hard for me because my other doctor and I were working on me never touching, and it just seemed like there was this miscommunication. So ways that we can even work together with dermatologists and create more conducive ways to manage this illness, that would be wonderful.

I did want to mention of we have a skin picking tracking log that's super helpful to become really aware of when you're picking, where you're picking on your body, where you're picking in the environment that you live in, and what thoughts you're having when you're doing so. So I highly recommend checking out the blog we offer. It's free, downloadable on our website, as well as our newsletter, just starting the conversation as something to offer for your new clients who might be a skin picker, having a place to point them a group that they know that they can belong to, that really says a lot about you and your practice, and I think is the beginning of a great relationship.

[Transcript has been edited for clarity.]