Self-diagnosis. We are all familiar with it and we have probably all engaged in it at least once or twice. But how does self-diagnosis impact on those who have either been diagnosed with or are clearly suffering from a mental health disorder, such as Dermatillomania? This is a topic I feel compelled to write about, it is a controversial one none the less but I feel that someone has to give this topic a voice.
As a Dermatillomania awareness advocate I come across and converse with many derma sufferers on a daily basis. Mostly what I see is upsetting – people caught in the grips of an illness that is literally tearing their lives and skin apart, then there is the occasional hopeful story – those who say they used to suffer from the illness but now have it beat (I always wish there was photographic proof for these stories though as I am a bit of a sceptic); and finally there are times when what I see confuses and deeply upsets me. By this I mean those who say they are suffering from Dermatillomania and yet I can’t see any scars or marks on them. Then I find myself wishing that my derma could be that mild [edit: as physically mild as theirs] so I too could experience what it’s like to wear tank tops, shorts, go without makeup, or even wear a bikini! In fact I don’t even own said swimwear. The last time I went swimming was 11 years ago when I was 14 years old. I lived in a very hot and humid coastal town, so avoiding the water was near impossible, it just came with a sideline of questions and bullying.
What I would have looked like if I wore a bikini – 2009.
Now as a Dermatillomania sufferer I am well aware of the tips and tricks one can take advantage of to hide the damage we do to our bodies, including Photoshop, taking photographs from certain angles, experimenting with different kinds of lighting, wearing certain types of clothing and picking only in certain areas. I am also well aware that Dermatillomania is a condition similar to physical illness, in that the sufferer can go through periods of remission, a word most commonly associated with cancer but it refers to the period of time during a serious illness when the patient’s health improves. I experienced remission when I was 17 years old to the point I almost considered myself recovered, although I did still pick every day even if it was only at a handful of hidden spots. Then I went through similar incidences of remission again when I was 22 and 24 although I relapsed in both instances within a matter of months. My skin-picking also decreases during winter when I have less opportunity to pick at my skin due to the fact it is always comfortably covered by jeans, jumpers, scarves, etc. And because I am not standing out as the only person wearing pants and long sleeves (as I do in the warmer months of spring and summer) I find that I fit in to the wider community a lot more which lessens my stress, depression and anxiety which in turn decreases how often I pick. So keeping all of this in mind I understand that I may be making judgements on people who are in remission; however if this is the case then it is helpful to state that you are in remission when discussing Dermatillomania with other sufferers so they don’t feel upset or confused by how flawless your skin looks in comparison to theirs. This is something that I learnt when I was in remission interacting with other sufferers and I found myself having to explain that I really did know how it felt to have severe Dermatillomania.
In remission – year 12 school ball 2006.
In remission – 2006.
When I was 19-21 years old, my Dermatillomania reached its most severe point and thankfully it hasn’t been back there since. I was that disabled by my condition that I NEVER left my house without assistance and only then it was to force myself to do the grocery shopping in order for me to feed my son. I could not even walk to my letterbox, I could not put my bins out on the verge, I could not even open my front door to put rubbish in the bin, I would not open my front door to anyone and I would not even hang the washing out in my own backyard for fear of being spotted by a neighbour. My curtains and blinds were always drawn shut – I lived in complete darkness for more months than I can count! My only regular interaction with others was with mental health professionals, social workers and family support workers. I was that disabled by Dermatillomania I needed encouragement to walk outside of my own house because I felt as though my legs were going to collapse underneath me from the anxiety of it all; and if someone did manage to convince me to leave my house I would walk with my head faced firmly down, eyes fixated on the pavement, struggling to breathe, on the brink of tears and completely lost for words. During this time of my life I would engage in 7 hour long picking sessions most nights, where I would gouge at my skin with tweezers to the point I felt physically ill. I hardly ever slept, I was constantly infected and I was inundated by suicidal thoughts. I started planning my own death and writing goodbye letters. The next day I ended up as an outpatient at my nearest mental health hospital. This is severe Dermatillomania.
My Dermatillomania at its worst – 2009.
Relapsing right before a wedding – 2011.
In the DSM-5 it states that: “Excoriation (skin-picking) disorder is characterized by recurrent skin picking resulting in skin lesions. Individuals with excoriation disorder must have made repeated attempts to decrease or stop the skin picking, which must cause clinically significant distress or impairment in social, occupational or other important areas of functioning. The symptoms must not be better explained by symptoms of another mental disorder”.
Apart from the name Excoriation Disorder, I feel that the DSM-5 has it fairly spot on so far. To be diagnosed with the condition one must have skin lesions present on their body, there must have been some desire to want to stop, it must cause clinically significant distress and/or it must cause impairment in social or occupational functioning. It also must not be better explained by symptoms of another mental disorder and I think this is the most important signifier. In some instances there seems to be a fine line between Dermatillomania and Body Dysmorphic Disorder. I say this because if one has flawless skin but believes they have imperfections on their body that are not observable or appear slight to others, then this more accurately fits BDD. With Dermatillomania there is no doubt to oneself or others that the condition very much exists physically! This is backed up in the DSM-5 under the Body Dysmorphic Disorder Diagnostic Criteria which states that a BDD sufferer has a “preoccupation with one or more perceived defects or flaws in physical appearance that are not observable or appear slight to others. At some point during the course of the disorder, the individual has performed repetitive behaviours (e.g., mirror checking, excessive grooming, skin picking) in response to the appearance concerns”. The DSM-5 then goes on to state under the Excoriation Disorder section that although “skin picking may occur in individuals with body dysmorphic disorder who pick their skin solely because of appearance concerns; in such cases, excoriation disorder should not be diagnosed”.
This brings me to my next point however and that is that the DSM-5 should include an assessment criterion which diagnoses Dermatillomania on a sliding scale as it does with depression. When my derma was at its worst I was also diagnosed with severe depression however I can go through stages now where my depression is quite mild. Then there are days when I am just sad. Sadness and depression are two different things as are skin picking and Dermatillomania. One has to be severe enough to negatively impact the sufferer’s mental health and/or their ability to function in social situations in order to be classed as a disorder. Hopefully with more research and more awareness into this disorder a sliding scale for derma might come into existence, one where it can be assessed as mild, moderate or severe. I feel this is important because some people only focus on one area (and it may be an area that one can hide) whereas other sufferers can’t help but pick at numerous areas and in places that can only be hidden when the sufferer takes great extents to do so (e.g. by wearing long sleeves and pants in summer). Also some derma sufferers are still able to maintain friendships, relationships and hold down employment whereas others are unable to function in any social situation. In order for no one person to feel isolated about living with a condition such as Dermatillomania, it is important that there are different ways to describe the severity of the disorder, ones that are backed up by thorough medical and psychological research.
In a world where Dermatillomania is only just starting to be recognised in the medical and psychological field, I understand that many sufferers self-diagnose because they feel that there is no other option for them. I self-diagnosed 5 years ago when I first found information online about this disorder but I then brought that information to my doctor and the psychologist I was seeing at the time in order to receive a proper documented diagnosis – albeit they have spelt Dermatillomania wrong on my file! Whilst self-diagnosis can be helpful, it is only a stepping stone in a greater journey towards clinical diagnosis, treatment and then hopefully recovery. The reason being is that when self-diagnosing ourselves with disorders or illnesses, whether they be physical or mental, we can sometimes get it wrong or be quick to label a habit something more serious than it actually is. To put this in perspective: I often pluck my eyebrows, sometimes I over pluck them in my desire to shape them perfectly, I will also pull stray hairs from my chin or upper lip, and if my hair is done up in a style and I notice some are out of place I will pull them too. I occasionally pull hair but I do not have Trichotillomania or Trich. My hair pulling is nothing out of the ordinary and does not cause me any distress or social embarrassment. Everyone picks at their skin. This is normal. Many people even take pleasure in popping pimples or satisfying an itch. This is also normal. What is not normal is when you do not know how to stop and when you keep going to a point that it causes you significant distress and/or impacts on your ability to function socially. So please keep this in mind when self-diagnosing, as a wrong diagnosis can have a detrimental effect on both yourself and those suffering from the mental health disorder in question. I don’t want Dermatillomania to be misunderstood more than it already is or to be made out less serious than it actually is – this disorder has the potential to put a sufferer in a life threatening situation and this is why I am so passionate about spreading awareness, however controversial it may be.
Getting better – December 2013.