This is by far the most challenging thing I have ever written for the fact that it is so deeply personal.
In the article I outline how I tend to hide behind humour quite a bit – I’m a bit of a closed book, so to lay all of this bare onto a blog post was quite difficult, but it has already been so so worth it.
A few of you have reached out to me since this was published on Jade’s blog and it truly means the world to me to hear from people going through the same thing, or people who just want to learn a little bit more about the condition.
Enough rambling! Without further ado; Here is my story.
My name is Elaine, I’m 21, and I suffer from eczema.
I have eczema on my face, neck, arms and hands. I sometimes get patches on my legs and feet, but they’re nowhere near as out of control as the eczema on my upper body. The type of eczema that I have is dyshidrotic eczema. It’s like little bubbles under my skin that raise and get irritated. And it’s insanely itchy. It’s known as the itch that rashes, as the more you itch, the more it intensifies. Usually it’s caused by an allergic reaction, but sometimes it just, well, appears. I’ve had an allergy test with the hopes of finding something I should avoid, but I can’t seem to find anything. I’ve tried to cut out certain food groups, but to no avail. It feels like I’m fighting an uphill battle. For every patch that clears up, another two appear.
I had bouts of eczema throughout my childhood, but nothing severe. When I was nineteen, it appeared on my wrists. I thought it was no big deal until it spread… and spread. Already suffering from anxiety, eczema just felt like another item to add onto the already exhaustive list of issues and insecurities I struggled with. I’m the first one to crack an alligator joke about my skin, or say in a creepy tone ‘in my spare time I like to compulsively pick my skin’, but underneath my easygoing and clownish facade, it actually really bothers me. I still think it’s important to laugh at myself, but for so long I hid behind humour. If anyone asked how my skin was, I would crack a joke and pretend it wasn’t bothering me. Truth is, it was bothering me a whole lot more than I let anyone believe.
Eczema drains you; emotionally and physically. It’s hard to believe that I can be in any way attractive when an angry wave of redness is engulfing my body. I had to learn how to adapt to my new condition. It’s so much more than just having to slather on cream.
It’s not being able to do your dishes because it stings too much. It’s not being able to go outside unless you’re caked in makeup. It’s not being able to bend your fingers. Rubbing your hands on your jeans in class and hoping no one will notice because you feel ashamed at your compulsion to itch. Sneaking off to the bathroom while working to indulge your insatiable desire to scratch already broken skin and then panicking when you bleed. You’re afraid to stay over at other people’s houses incase your skin flakes and bleeds on their bed sheets. Waking up with blood caked under your fingernails. Not being able to sleep because you can’t stop scratching, and having to lie in such a position that you’re not putting pressure on any of the rash. Avoiding college because you don’t want anyone to see your skin. Not being able to turn your neck to check for traffic before crossing a road incase you open the freshly healed wounds. That feeling of insanity when you know you shouldn’t itch, but you just can’t stop. It’s not a pretty picture, but that’s just my everyday life.
Compulsive skin picking, or dermatillomania, has been a big part of my life since my eczema decided to make an unwelcome comeback in adulthood. Dermatillomania is like trichotillomania, where you compulsively pick out your hair. Instead of pulling my hair, I pick my skin. It’s a form of O.C.D. (obsessive compulsive disorder). I noticed pretty early on that the worse my anxiety was, the worse my dermatillomania got. I didn’t even know that dermatillomania was a thing that other people suffered from until I was browsing youtube, looking at short films, when I came across this:
I was honestly overwhelmed when I realised that I wasn’t actually crazy. A lot of people will think ‘your eczema wouldn’t be so bad if you would just leave it alone!’, but it’s really not that easy. It’s an addiction of sorts. The short film shows a girl trying to get ready for her day, and highlights the very real impact dermatillomania can have even when carrying out the everyday task of having a shower. The shame of trying to hide it from your family, the frantic search for bandages, and worst of all, when the blood seeps through your clothes. Dermatillomania is not a self-harming practice. It’s more so the irrational idea that you want to pick away all of the imperfections (by ultimately, creating more). I know it’s irrational and that I’m not helping myself, yet I can’t stop. Even when my eczema isn’t itchy, I still pick constantly.
I’ve been trying to get my dermatillomania under control, but it is really difficult. I do it without even noticing sometimes. I’ve done little things, like timing myself going to the bathroom so as I’m not tempted to stare at myself in the bathroom mirror for 20 minutes, silently seething with hatred at the scars I’ve inflicted upon myself, and trying to resist the urge to pick more. I’m getting there, really, really slowly. Resisting the temptation to pick is a little victory for me. Looking at my scars and not feeling grossed out any more is a little victory for me. Beginning the journey to loving myself is a huge victory.
I used to think of myself as some kind of flakey, red monster. Falling into that dark way of thinking is so easy. And it spirals. What I kept forgetting during my darkest times was that fact that eczema is so common that people will identify with you more than be repulsed by you. I always used to misunderstand when people would suggest a cream for me to try, thinking it was a low dig, when in reality that suggestion is coming from a kind place.
I was in a long term relationship when my eczema got really bad. He had loved me before I had it and he loved me after it rampantly spread over my body. When that relationship ended I found myself in a bad place, believing that I would have to learn to be alone – that no one would ever love me and that the skin that I detest so much would mean that no one would ever want me. Seriously, how the hell can anyone find me sexy? And if they do, surely there must be something wrong with them? As I said before, a lot of people are extremely understanding and I am now in a happy relationship.
Eczema changes the dynamic of our relationship quite a bit, considering I don’t sleep a lot or sometimes can’t do things with him due to the pain or feeling self conscious, but all that won’t matter to the right person. Sometimes I can’t even hug him because the salt in his sweat burns me (I’m like a really big slug). He doesn’t suffer from it himself, but he tries to understand what I’m going through. And my friends and family help too. They see me, not my eczema.
The overwhelming amount of support I’ve received throughout my journey with eczema has been unbelievable. Friends reassuring me that I’m not as monstrous as I feel, housemates putting the pieces back together with me by helping me go back to college and listening to my late-night ramblings about my frustrations, family who are like on-call counselors ready to perk me up a little bit, and kind strangers on the internet who reach out to you (reddit.com/r/eczema is full of these fantastic people).
The only person holding me back is me. Eczema is something I just kind of have to get on with, and I’m not going to let it hold me back or limit my ambitions. It controlled my life for long enough. I’m taking a stand now. I’m making the best of a bad situation and working on helping others with similar issues. Turning what I once saw as a negative into a positive, I joined the Eczema Council of Ireland, and preparations are underway for Eczema awareness week and we have so many exciting plans; such as workshops and compiling information booklets.
With a lot of self love (even though it’s really hard sometimes) and support from the most fantastic bunch of people ever, I feel like I’m finally beginning to accept that it’s just something that I have. I’ll wear that cute top that I avoided because it showcases my red elbows. I’ll leave the house makeup free. I’ll do what I want, because although I suffer from eczema – it does not define me. Everyone has their shit, eczema is just a little more visible (and flakey – oh the glamour!)
For those eczema suffers/dermatillomaniacs/anyone who feels kind of rough: you’re amazing you beautiful human and don’t allow your skin, or any of your issues to lead you to believe you’re anything less than magnificent. You are not a slave to your skin. You’re stronger for your illness as you have had to adapt to stuff that isn’t pleasant.
We’ve got this. We are strong. And we will not let this define us.
For anyone that wants to reach out, I’d love to hear from you. If you want a chat, or a little bit of cheering up, I promise I’ll tell you the cringiest dad jokes I know to try and help. You can find me at the following places;