Self-Diagnosis (A Follow Up Post)
I felt like my last post may have come off as a bit of a “my skin picking is more severe than yours” rant which was not my intention at all because regardless of whether you suffer mildly or severely, you are still suffering and you can still have this disorder, so I felt the need to write this follow up post just to clarify a few things. Over the years I have noticed two things: 1. Those who are suffering quite mildly (in their own words) and therefore don’t feel like they fit into the derma community because they only pick certain areas, at certain spots and as such they feel like they fail at having this disorder; and 2. Those who are suffering quite severely (in their own words and as evident in their photographs and stories) and therefore don’t feel like they fit into the derma community because everyone seems to have it so much more under control than they do and as such they feel like they too fail at having this disorder. This is why I made the point in my last article that “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”. It was never meant to be a competition about who had it worse, it was just another viewpoint that I felt was important enough to be added to the conversation. Also when I spoke about severe dermatillomania, I gave an example from my own personal life. As someone who has suffered from this disorder for 21 plus years now I have experienced the highs and lows of Dermatillomania and have experienced stages where I would consider my suffering quite mild and at other times quite severe. Part of the reason I want a sliding scale for derma to come into existence is because if we can’t categorise derma then how can we even begin to evaluate our own progress or relapses? Or in my case how can I even begin to explain how I used to look and feel a few years ago compared to how I look and feel now? This is not about singling people out; this is about finding ways to make people feel included!
Sliding scale of severity set aside, the reason I wrote my last post was because I wanted to raise the point that while self-diagnosis can be helpful as a starting point (as it was for me) it does not always guarantee an accurate diagnosis and that is why it is worthwhile to have a discussion with a medically qualified health provider about the information you have found online. The second point I wanted to bring up was that there is a difference between having a bad habit, suffering from tendencies of a disorder or suffering from the full blown disorder itself. The third point I wanted to raise was that when it comes to Dermatillomania there are varying degrees of severity, just as there is with most other mental and physical illnesses and I think this needs to be acknowledged by medical professionals and other sufferers as well – not because it is a competition but because treatment options may vary and our ability to relate to other sufferers may differ depending on our own personal struggles with this disorder. And the final point I wanted to make was that the symptoms of Dermatillomania are very similar to those of Body Dysmorphic Disorder which is why it might be helpful to seek a clinical diagnosis after self-diagnosing simply to ensure that the information you are accessing online will actually be beneficial to you.
I think Dr. Phil hit the nail on the head last year with the two segments he aired that related to skin picking. The first “Distorted Beauty” featured a guest by the name of April who sought help for Dermatillomania but was perceived to be suffering from Body Dysmorphic Disorder instead. Many viewers agreed with Dr. Phil because for those of us covered in marks/scars/open wounds April’s skin appeared flawless. Even in her photographs she appeared flawless. And this was backed up by Dr. Phil’s own words referring to April’s skin after she had removed her makeup: “It’s flawless. You are stunning!” It is hard to make judgements on this without seeing her in person though because she could have made a concerted effort to clear her skin up for the show and she was wearing long pants and sleeves in the segment however given the information I was being presented with I found myself in support of Dr. Phil’s diagnosis.
Fast forward a few months and “Obsessed and Over It” features a guest by the name of Samantha and her little sister Rachel who both engage in skin picking. The marks/scars/open wounds were highly visible not only in her photographs but also when she was asked to remove her makeup. We were even able to see video footage of Samantha and her younger sister engaged in the skin picking behaviour and I couldn’t help but think “FINALLY”! Finally Dr. Phil has featured someone on his show clearly suffering from Dermatillomania and he even went as far as to mention the DSM-5 and the diagnosis of “Excoriation Disorder”. What a relief!
Whilst I was glad that a professional with a widespread public audience had made the distinction between Dermatillomania and BDD clear there were still some things bothering me and so I felt compelled to write about self-diagnosis because it was paining me to see:
- People seeing a list of mental illnesses and/or body focused repetitive behaviours and saying “Oh I have EVERY single one of those” without seeking out a clinical diagnosis to find out if they actually DO suffer from every single mental disorder/BFRB listed. Again there is a difference between sharing symptoms from a multitude of disorders or each symptom/behaviour being severe enough on its own to warrant the diagnosis of multiple separate disorders.
- “Supposed” sufferers bullying other sufferers online, leaving remarks such as “Why can’t you just stop”, “Why would you pick where people can see it” “Why would you post such a disgusting picture” … boy does it hurt me to see other sufferers subjected to this kind of bullying by people who are not only meant to understand the disorder but also be suffering from it themselves?
- People saying “Oh I pop pimples too” and then assuming that means they also have the disorder and therefore understand a Dermatillomaniac’s innermost struggles.
- People who say they have Dermatillomania and then don’t understand why I don’t socialise, why I don’t have many friends, why I’m too embarrassed to go out after a picking session, why I HAVE to put makeup on before I let anyone see me, why I have to wear long sleeves and long pants in summer, why I don’t want to get naked in front of anyone, why I don’t want a relationship and the list goes on and on and on. If you have the disorder like you claim you do… wouldn’t you to some extent, understand what it is I’m going through?
- And lastly those who again supposedly have Dermatillomania and then call me vain because of my preoccupation with my skin. Facepalm right there.
For the most part I have had overwhelmingly positive interactions with people online and there have also been some positive experiences in face-to-face interactions as well. But then I have also witnessed and/or experienced all of the above. Now I am extremely understanding about the varying degrees of suffering that a Dermatillomaniac can experience and I totally get that this disorder comes about in a multitude of ways and therefore presents itself in a multitude of ways which is why I have never turned away a sufferer seeking help or advice. My aim here is not to take away from other’s struggles or win some kind of imaginary competition about “who has it worse”; it is about educating people, raising awareness of this disorder and encouraging those who are unsure whether or not they may be suffering from this disorder to seek a diagnosis.
And if you don’t have this disorder but you want to reach out or try and relate to what it is we go through, I will leave you with the most positive interaction I have ever experienced between a non-sufferer and myself when my picking was in a pretty severe state:
When I was around 19-20 years old I decided to take a holiday to visit my best friend, her fiancé and their daughter and stay with them in their home for over a week. It was the first holiday I had taken away from the comfort zone of my own home as an adult sufferer of Dermatillomania. I had packed all the necessities: Makeup and Tweezers. I would sit with the urges to pick ALL day until everyone went to bed, then I would grab my toiletries bag and rush into the bathroom only to spend the next few hours picking in front of the mirror. One night smack bang right in the middle of a gloriously successful picking session my best friends fiancé walked into the bathroom and caught me leaning in close to the mirror, tweezers in hand, covered in fresh open sores with blood spotted all over my face. I tried my best to cover up what I’d been doing and I was that shocked by his presence I didn’t even know how to begin to explain to him this sight he was witnessing. Instead of recoiling in horror or making some disgusting comment he simply walked over to the wall-length mirror, inspected his face and then said something along the lines of “I pop pimples and pick at imperfections on my skin too. I could easily get absorbed in it and be here all day except the only difference is I know when to stop and walk away.” That moment and that comment have always stayed with me as a positive interaction. Here was a man who despite our differences could provide a totally empathetic response that both made me feel normal by admitting he picked/popped too while recognising the severity of what I was going through by acknowledging I didn’t know when to stop. Had he walked into the bathroom and said oh I sometimes pop/pick too so I know how you feel, it probably wouldn’t have come off as such a positive experience for me. Instead here was someone who totally got it, without having to be a derma sufferer himself. Still to this day I don’t think he knows how much that interaction had an overwhelmingly positive effect on me but if he happens to stumble across this post one day … THANK YOU!
Self-Diagnosis: Harmless or Harmful?
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.
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.
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.
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.