“I thought I was the only one!” “I didn’t know it was an actual disorder!”
I see these kinds of messages all the time, whether it’s posted in a Facebook group, or even on Tumblr, these messages are a constant wave. And I was once that person who thought she was the only one with a strange disorder.
For the majority of my life, at least eighteen out of going on twenty-three years, I’ve been a skin picker. Like many, for a long while of having this disorder, dermatillomania, I thought I was the only one, mostly because no one could identify it and no one else seemed to have it. I have a distinct memory of being taken to the doctor as a child, being asked why I pick my skin, I lied about it by saying I don’t, and that was that. Have a healing cream and be on your way. I remember my family members getting angry at me for picking, or trying to shame me out of it. I remember my classmates being repulsed by the marks. I remember years of being asked questions like “what happened to your face?”, “what happened to your skin?”, and “do you have chicken pox?” I remember a chorus of “just stop.” None of us understood. Not even me.
All of this made me feel like I had to hide, made me feel shame and self-hatred, made me feel alone. Since no one could figure out what was wrong with me, I felt like I had to be the only one with this gross problem. I couldn’t turn to anyone because I was afraid they would give me the same disgusted looks like everyone else was; I was afraid to lose friends and family over this. I wanted so badly to just stop and I could never understand why I couldn’t just put my hands down and leave my skin alone.
Until I was sixteen. That was when I first looked up skin picking online, even though I was ashamed to even do that. At the time, there was only one computer in my house, and I had this fear that my mom would see what I was looking up; I worried that she would find out my secret, which really wasn’t much of a secret anyway since it was written all over my skin. Yet even though I was anxious to be doing so, I looked up skin picking online to see what I could find, and that was the first time I came across the term chronic skin picking and realized it was an actual disorder.
You might think that would be my epiphany moment, but it wasn’t. Instead it just made me feel all the more terrible. Oh my god, I had a disorder. It felt like a terrible life sentence and like there was nothing I could do about it. Like all I could do was suffer through it because barely anyone had heard of it. And I still felt alone, because all I had found was this webpage with information on it, not a forum or anything like that. I still didn’t know anyone else who had the disorder. There was no one I could reach out to.
It wasn’t until my second year of university, at nineteen years old, that I began to see the online community that existed. It was at a time that Facebook’s pages were still called fan pages that you became a fan of instead of liking and they still had discussion forums (unlike now where it’s all wall posts), and I had just discovered Angela Hartlin’s book FOREVER MARKED: A Dermatillomania Diary. I was so thrilled to find that book, because it was proof that there was someone else out there with this disorder (and another Canadian, no less!) and I could relate to what she was saying to some extent. I say to some extent because she picked in ways I didn’t—getting lost for hours in a trance, using tools, using the mirror. I’ve never done any of that, and so I still felt a bit of distance from her story, but it was enough to see that someone else shared this disorder. I immediately looked for a fan page on Facebook, and there it was. Not only that, but it had a discussion board! Not only had I found Angela’s story, but I had suddenly found other pickers, too!
I was so excited. I would finally be able to talk to people about having this disorder and they would understand, too. But then I started to read the posts, and many of them were like Angela’s experiences as they talked about tools and mirrors and getting lost for hours. I was disappointed. I had hoped to find more people with a story and experiences like mine, but I didn’t and I felt different even from them. Even though I had felt like I could relate to Angela’s story on some level, I felt blocked off from these people. I remember I posted my own topic, and I think I had titled it something like, “Even here I don’t feel like I belong.” It was heartbreaking for me and I once again fell silent in my disorder, despite any reassurances that we each experienced the disorder differently and I was still welcome there.
I was in such a dark place when it came to my mental health, and feeling alone made it that much worse. I felt ostracized, even from other pickers, but it was never their fault. It wasn’t like they drove me away or said I couldn’t participate because my story was different, but I felt like I couldn’t because of it. I ostracized myself from them.
It wasn’t until I was added to a Facebook group about a year later called Dermatillomania Awareness that I started to feel more at home. For a long while, I didn’t comment or post there either because I was worried the posts might show up on my news feed. So for the first little bit, I just read posts and found that there were some other people who had similar stories to mine, too. After learning it was a closed group, meaning that no one would be able to see what I said except for those in the group, I made a post. I wish I could remember exactly what I said in that post, but I imagine it was the general sort of introduction I give: how long I’ve had the disorder, who I am, etc.. All I know is that moment was my catalyst. Somehow, this group was different from the discussion boards.
I say that’s my catalyst because that’s when I started talking. That’s when I was able to share and get feedback from others. That’s when I was able to start to figure myself and this disorder out, and learn how to deal with it in my own way. I started to learn to shed the shame I felt, and understand that I didn’t have to surrender to the disorder. I began to learn to love myself despite it. I had been doing my own journaling and that was helping too, but being able to talk to others who shared my disorder and my experiences was something else entirely. It gave me new insight into myself and dermatillomania. But more importantly, it gave me a place to belong.
The BFRB community is composed of the most loving and supportive people I have ever met. Oftentimes online, we’ll come across bullies hiding behind screen names and miles of distance. People who give no second thought to tearing others down because they don’t have to see the hurt it causes. That’s not the case at all with this community. True, I am more immersed in the skin picking side of the community, but I’m starting to get to know people with other BFRBs, like trichotillomania, as well, so I feel like I’m beginning to see the community as a whole.
The Facebook group I’m a part of is a safe haven. Its doors are closed to the outside voices of ignorance and cruelty, and we’re left with each other. If you’re feeling down and share about it, the others will be there to lift you up and encourage you. If you need some advice, they’re ready to share. If you have a success, they’ll celebrate it with you. These people aren’t just your support network, they become your friends and family. Your long distance shoulders to cry on as well as your long distance high fives. I’m honoured to be able to call so many of these fabulous individuals my friends and feel so grateful that I can go to them in times of need and know that they’ll be able to put a smile on my face or encourage me to keep fighting. I’m honoured to be able to share my journey with them, and that they’re willing to share their journeys with me.
I’m newer to the Tumblr and Twitter BFRB community, but they’re proving to be just as tight knit, loving and supportive of each other as the people I know on Facebook. In this community, we share our stories, and our tips and our triumphs because we want to help each other heal. To some that means working towards stopping entirely, to others that means getting to a stable and comfortable place mentally. I had never intended to speak on Tumblr or Twitter about my picking because they’re more public and anyone can find them, but I’m so glad I started talking because it opened up a whole other side of the community for me. It opened up the doors for being able to interact with and reach out to even more pickers and pullers.
I’ve learned and continue to learn so much because of the community and I strongly believe it is an integral part of starting to heal. They continue to be my support system, and I can only hope that I fulfill that role for them, too. I have never felt so compelled to be a part of something in my life, and I’ve never felt so much like I’ve belonged. I love these people and owe them my thanks for helping me through my worst times and for celebrating my best times with me. Ultimately for teaching me things about the disorder and myself that I never would have known otherwise, and most importantly for making me feel welcome.
My first experience back on the discussion boards wasn’t good for me, but maybe I just wasn’t ready to jump on in yet. Maybe that kind of discussion board just wasn’t the right environment. Whatever the case, since then, what I’ve learned through posting and sharing in these groups and other branches of the online BFRB community that it’s okay to be different. We all share a disorder or the same kind of disorder, yes, but our stories don’t all have to be exactly the same in order to bond. Like with anything in life, we can be different and still be there for each other. We can be different and still come to understand and love one another.
My hope is that more pickers, pullers and any other BFRB sufferers stumble upon this wonderful community and come to the joyful realization that they aren’t alone either because when we realize we’re not alone, then we can start to heal.
Laura is a writer from the Niagara Region in Ontario & can be reached the following ways:
Twitter: @Laura_Barton Blog: realityhitme.tumblr.com
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