Guest Post – Dermatillomania and me: the disorder I never knew I had

Mental illness is a complex beast, and anxiety is regularly joined by other disorders. But because anxiety is more widely known (although not necessarily better understood), sufferers often roll all of their issues into the snowball of anxiety, and don’t receive proper diagnosis and treatment of other disorders. I’ve already touched on my own experience of OCD (and how I had no idea that’s what it was!), and this is an all too common story.

Today I’m proud to bring you a guest post from fellow blogger, mental health advocate and small business owner Emma, where she talks about her own experience with little known disorder, Dermatillomania.

When I was younger, I would focus my picking on my face. I would sit for hours in front of a mirror until my whole face was red. I still do it occasionally, and have scarring and damage from my younger years.

But now I mainly pick at my thumbs. I often think to myself, ‘why am I doing this?’ – it hurts and looks awful but, whilst doing it, I get some form of relief and a strange sense of calm. It feels like a trance and sometimes I’m completely blissfully unaware I’m doing it at all.

Then I’ll realise what I’ve done and have no other choice but to tape my thumbs up – it’s so painful if I accidentally get liquid or shampoo in the sores.

Little did I know, until about 4 weeks ago, that it’s actually a known ‘impulse-control disorder and one of several body-focused repetitive behaviors (BFRBs) currently classified in the DSM-5 under Obsessive-Compulsive and Related Disorders.’ called Dermatillomania.

I would say my Dermatillomania varies in severity but I think this is common in those who suffer, from what I’ve read and researched so far. It gets better, then worse again, and then sometimes (although rarely), it can heal completely, but may always be there to some degree.

It has become normal now that my thumbs and face sometimes look red, I no longer remember really what it was like to not have red, sore or scarred thumbs. I think this led to a level of complacency on my part, and I don’t think I really recognise it as anything unusual any more.

Never knowing I had it, I never sought professional help and advice but now I know, I have connected with so many people and found some amazing resources and organisations like The Picking Me foundation, who specialise in helping sufferers of Dermatillomania. I now feel so much more validated, more at ease and far less alone or ashamed.

With lockdown it’s been particularly bad so, once it’s over, I’m planning to speak with my GP – they are helpful when it comes to my anxiety, but I don’t know why I never mentioned this odd habit before? I guess it’s never too late.

There’s still a long way to go in the general understanding of the disorder. I noticed, even when writing this post, that the word Dermatillomania doesn’t even show in the Word editor dictionary, but Trichotillomania does. So maybe writing about this, and highlighting this word and disorder more, is a good place to start.

But one positive thing has come out of my experience. After having a conversation with a friend about my anxiety, and how I might be able to relieve it with worry beads, I decided to try and make a jewellery version. In doing so, I started my own business – Worry Knot.

My initial aim was to create jewellery that can help ease anxiety by fiddling and twirling with necklaces. Whilst It has certainly helped ease my own anxiety, I also knew early on and during lockdown it might also help me keep my nails away from my thumbs too.

So far in my first 6 weeks of Worry Knot, there’s been a lot of learning, creating and product development, based on constructive feedback from my first customers and, already, I now make an improved version of my bracelets, which are more fit for the purpose of fiddling with – yay!

I’m really just at the beginning of learning about my Dermatillomania, and hopefully I can try out some CBT after lock-down too, but for now at least I have my Worry Knots to play with to keep my hands a little more busy.

And I’m hoping to help others too! Alongside developing and making my jewellery, I’ve also been advocating through my blog about mental health and giving an insight into my own personal struggles. I’m so glad I started writing a blog as I’ve discovered a lot about myself in the process. including finally understanding why I sit and pick my thumbs for hours!

I was lucky enough to be gifted a beautiful – and helpful! – necklace, so come back next week for my review, and all the benefits of the wonderful Worry Knot.