I am a walking contradiction. At times I find life so difficult that I think death is the only answer but then I desperately want to live. I fear ill health and death and yet I fear my fears to the point that I see death as the only way out.
I realised tonight that mental health is just as important as physical health and deserves the same amount of recognition. I have a mental condition and I don’t think I’ll ever be cured from it, the best I can do is learn how to manage the dis-ease. I find that my mental illness also causes physical illness. I feel all kinds of things that I just don’t want to feel but the more I try not to feel the more I end up feeling.
My legs are restless. I am lying in bed but my legs feel so itchy from the inside out that I just wish I could tear them both off. I feel like I need to get up and move around but I am so tired that I just don’t want to move. I’ve just discovered I have a vitamin B12 deficiency so all my symptoms of late can be put down to that – breathlessness, faintness, dizziness, chest pains, rapid heart rate, fatigue, depression, tingling arms and legs, restless legs, etc. At first my doctor just thought I was stressed and anxious, and I could believe that, but it turns out there was an underlying condition. Apparently it can be quite serious if left untreated but I am petrified of the treatment.
You see I fear medication because I fear side effects. Even though an illness makes me ill and could even possibly kill me I never take anything I am prescribed because the medication could make me ill and even possibly kill me. Seriously how fucked is my mind? Like can you even win with me?
And I know I don’t think rationally yet I can recognise my irrational thoughts as irrational. Like I think about ending my life over the most stupidest of things. No seriously it is ridiculous! When I was 13 years old I remember wanting to commit suicide because I thought my wrists were too thin and would snap at any given moment. Lately I’ve been wanting to end it all because I received a dodgy filling months ago and it is still causing me pain even after they were forced to redo it. Now I am too scared to have it replaced a third time so I am just putting up with the pain.
And I know there are people out there right now in excruciating pain. Mental and phsyical. And they would give anything to trade places with me. And here I am complaining. There are people battling cancer right this second. Mothers who have just lost a child. Travellers being beheaded by terrorists. And here I am in a warm comfortable bed. I had a beautiful deliciously healthy dinner and I relaxed to a movie and a new TV series tonight and yet I still can’t feel happy. I just feel… empty, lost, lonely, tired, hopeless and full of regret.
The only thing that helps me is to write. To just get it all out of me. I feel like a failure but at the same time a success. I feel lonely but at the same time I like being alone. I want to be well but at the same time I avoid everything that will make me well. I want more children but I fear I will never be able to have any more. I want to go and check that my fridge door is shut for the hundredth millionth time but I don’t want to keep giving in to my OCD. I want to not suffer with mental illness anymore but at the same time I am grateful that I am not suffering with a serious physical illness. I am so many things that I do not want to be and yet I do not do anything to change into the person that I do want to be. I am a walking contradiction. I don’t even know who I am anymore.
I understand that this blog post probably makes no sense. I haven’t bothered to censor myself. I just wanted to provide you with a snapshot of what goes on inside my head every second of every day. Dermatillomania is not my only disorder. Sometimes my anxiety, depression and OCD overwhelm me and at times like this, it is not at all related to the skin picking. Tonight is just a night for my other mental illnesses to come out and play. Anyone reading this would probably assume I was drunk or off my face on drugs. I know I sure would think so after reading such scattered thoughts. But then again I am a highly rational irrational person and I can assure you that I’m 110% sober but I maybe just maybe am a little bit crazy. Unfortunately.
It was after recently reading Laura Barton’s article in the TLC newsletter that I was reminded of a fellow Dermatillomania sufferer who chose to remove herself from the online Dermatillomania awareness/support groups due to some advice she had received from her therapist. The advice went something along the lines of “making a career out of Dermatillomania will only hinder your progress and recovery”. I remember the comment well because it immediately rubbed me up the wrong way. Not because I was disagreeing with this woman’s choice, as we all have free will, but because I strongly disagreed with the therapist’s advice or at least the wording of her advice.
When I first started searching online for some clue as to what on earth it was that I was suffering from, I stumbled across maybe one or two websites that contained information regarding Dermatillomania. Obviously I was relieved to discover that what I did had a name and that apparently there were other sufferers out there too, although going back six years ago I had no means of contacting these other people. However there was a downside to discovering this new information about my disorder. My skin picking all of a sudden became sort of normalised to me and my occasional experimentation with tweezers started to become a regular occurrence for me once I read that using “picking tools” was quite common. Now I can’t have a picking session without my tweezers and will go into a state of panic if I cannot find them or if I have them taken off me.
In saying all of this though, there were also a lot of positives to discovering my disorder had a name and that there were other sufferers out there like me. All of a sudden I didn’t feel so alone anymore. I also stopped feeling like I was going mentally insane – I actually had physical evidence (in addition to my many sores and scars) that what I did was a condition and I could print this proof out and give it to my psychologists and doctors. Then I started connecting with other sufferers online and the sense of community and the strong friendships that formed as a result of this broke my life of isolation. I was still severely depressed but I started to feel hopeful. I also started to feel for the first time in my life like I had a purpose and that there was a reason I was given this disorder. I wanted to help others! I had to help others!
I started making videos and posting them online to YouTube. A wealth of people contacted me thanking me for having the courage to shed much needed light on this condition. From there I realised that I needed to create a place where sufferers could connect with one another, share their stories and break their isolation and so my Dermatillomania Support Group on Facebook was born. Unfortunately my battle with severe depression reared its ugly head again and so I disappeared offline for a few years. Upon my return I noticed numerous groups, blogs and YouTube videos had popped up about Dermatillomania. It was so fantastic to see that the word was out and my desire to start spreading awareness came back with a vengeance.
In Australia, we are not fortunate enough to have a wonderful organisation like TLC or the newly formed CBSN running. In fact Dermatillomania, and to an extent even Trichotillomania, are still relatively unheard of here in the land down under. Doctors and psychologists are still mostly unaware that this condition has a name (or even exists) and I constantly struggle to find treatment professionals who are experienced in helping those suffering from BFRB’s. Something has to be done about this! And this is why I have chosen to start spreading as much awareness as I can. I blog, post videos and write in support groups not only to help others but to also get the word out there that we have a condition that needs much needed attention in the forms of research, education, public awareness and treatment. Too many people are suffering in silence and that is no way to live. We need to break the silence and the stigma surrounding BFRB’s, such as Dermatillomania.
I blog, vlog, create support networks, run my own website, fundraise and hope to start up a not for profit organisation here in Australia not because I want to make a career out of Dermatillomania but because I don’t want others to have to suffer in silence like I did for 16 years of my life. This is something I do because I am passionate about the cause and I am passionate about the people who are affected by this disorder. I do not get paid for the time and effort I put into spreading awareness and it also has not hindered my progress or my recovery. In fact it has helped me! Depression is often a comorbid disorder to Dermatillomania and one way of helping depression is to feel once again like there is a reason/purpose/meaning to your life. Becoming a Dermatillomania awareness advocate has made me more accountable of my actions, has decreased my skin picking and has made me a happier and more focused person.
I understand that for some living in one’s illness can be dangerous but I think it is important to distinguish the difference between being passionate about something, in this case raising awareness of Dermatillomania (not exactly making a career out of it), and living and breathing Dermatillomania. I have come across the former and the latter in regards to sufferers of mental illness. The latter will spend every minute of their free time reading books, articles and blogs on their illness, making friendships with only those who suffer from their illness, carrying on conversations only about their illness, they may also to choose to study their illness at higher education institutions and/or choose to make a career out of treating people with their illness (e.g. by becoming a psychologist). This is unhealthy because their focus is always on their condition and not on anything else. They quickly and easily become consumed by their negative state of mental health and the more one devotes attention to something the more that something usually becomes amplified – in the case of Dermatillomania, the more one focuses on skin picking the more one tends to pick.
However when talking about the former, there is nothing wrong with wanting to learn a little bit more about your condition and the reasons why you may do what you do. It is also perfectly natural to want to connect with others and share your stories. Quite a few Dermatillomania sufferers have either already written, started to write, or plan to write books of their own that document their struggles and their successes with Dermatillomania. Everything in life is about balance. Take stress for example – too little stress in your life can leave you feeling bored, lethargic and unmotivated whereas too much stress in your life can lead to nervous breakdowns and other serious health issues such as heart complications. The optimal amount of stress in your life will allow you to perform tasks without becoming overwhelmed by them. The same can be said about Dermatillomania – too much involvement in the condition may cause you to only focus on the skin picking therefore amplifying the behaviour but too little involvement or no involvement at all can leave you feeling isolated, depressed and confused. And this is why I worry about that particular therapist’s advice – what if she has turned a sufferer away from the only support network she knew? What if this sufferer had great plans for her book and it could have reached thousands of other sufferers, further breaking the stigma and silence that surrounds this disorder?
I for one don’t spend hours on end reading current research on Dermatillomania and BFRBs… I’m studying to become a teacher not a psychologist after all! Neither do I sit in front of my computer all day trolling the internet for Dermatillomania articles/blogs/websites, etc. I study full time, have a part time job and a six year old child to look after so as much as I wish I had a little more time to devote to the Derma community, I sometimes struggle to even squeeze in a bite to eat! However on the rare occasion I find myself with some spare time I always choose to contribute something towards the Derma cause (lately this has been in the form of creating awareness wristbands) because Dermatillomania is of personal interest to me and I want others to know more about it. I don’t however sit there and let it consume me, intent on making a career out of it. I simply want to let other people know that our condition needs to be taken seriously so we can get the proper psychological and medical help that we need… if that means I spend my spare time making as much noise about Dermatillomania as I can then so be it. Some people knit, others play a sport, I prefer to scream and shout! And who knows one day I might even write a book about it but I’m sure that will be in between marking papers and changing diapers!
I guess after all that the point I was trying to make was if you want to make a career out of Dermatillomania – go for it! There is nothing unhealthy about pursing something you are passionate about and if it happens to help you pay your bills on the side then that’s an added bonus. However if by focusing on Dermatillomania ALL the time by writing about it, reading about it, talking about it, you find yourself becoming consumed by Dermatillomania and this worsens your condition then this is unhealthy. This is living in one’s condition and it can hinder progress and recovery. So please if you are a therapist choose your words carefully and make sure you distinguish between “making a career out of one’s condition and/or being passionate about the cause”, compared with “living in or becoming consumed by one’s condition”; we don’t want to cut sufferers off from what may be their only lifeline. And if you have received similar advice from your therapist, take a step back, look at your situation and ask yourself honestly if your involvement with your condition has made your symptoms better or worse. Let that answer guide your future direction in relation to your condition. For example, wondering how this article will be received combined with the stress of getting the awareness wristbands up for sale has caused me to start picking at my chin and chest. In order to take care of myself I will take a step back from the cause tonight and hold off on another blog post for a while. Remember to take a step back when you need to, aim for a healthy balance, take care of yourself first and foremost and always do what’s right for you!