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.

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”.

November 2013.

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.

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Posted on December 28, 2013, in Picking, Pictures and tagged , , , , , , , , . Bookmark the permalink. 8 Comments.

  1. I just finished reading your post after finding the link via Facebook. I too Dermatillomania. I have had it since my twenties and just turned forty-six. I typically have one lesion for months, sometimes well over it year. I pick and peel the skin, often until it is bloody. I often use tweezers, needles or a razor to try to make the lesion, I call it “the spot” smooth and flat. The spot is either on my face or on my neck. When I was younger if would be hidden, typically under my hair on the back of my neck. In the past 15 years it has been along my jaw bone. Right now it is my left temple, in front of my hairline. I pick it throughout the day, usually with a mirror and it is very hard to stop. I often miss appointments because I don’t stop picking and leave my house. At night I pick it in bed for hours, often all night. I have been seeing a psychologist that specializes in anxiety disorders and Dermatillomania. I improved after 3 visits then relapsed. I often put a bandaid over the spot. Then I will pick at something else or pick and pull off my toenails. I feel my Derma behaviors are severe. I know you feel to be severe or really have Derma you should exhibit many lesions and not able to wear a bathing suit however that is not true for all of us that have this illness. In October I went to see a Nerurologist for numbness in my left hand. She tested the nerves in both my hands finding a pinched nerve in my left h and that I pick the current spot with that she feels needs surgery! I was too embarrassed to tell her why it was pinched. Sincerely, Leslie Funk

    • Hi Leslie,

      Thank you for visiting my blog and thank you for leaving a comment – which I love by the way as it gives a totally different perspective on things! I spent weeks going over and over this article before I posted it as I was really worried it would come off as a “my skin picking is more severe than yours” rant and many times I took out the section on the bikini comments but then I decided to leave them in because for me something I have always wanted to do but have never been able to do because of this disorder is wear a bikini, go to the beach and swim! Although you say you don’t have many lesions on your body, you completely and utterly understand what it is like to suffer from this disorder – missing appointments, picking for hours on end, nerve damage from endless picking, etc. You have also sought help for your disorder and from what you tell me your derma behaviours do sound severe. Whilst I think that having multiple lesions on your body does indicate severity of this disorder, so does the amount of distress it causes the sufferer and how much it impacts on their day to day lives. My frustration is coming from those who are quick to self-diagnose themselves with Dermatillomania after learning that skin-picking is now a “thing” and yet upon talking to them they readily admit that they don’t feel distress from the picking, it has not impacted on their ability to function socially and that they know when to stop picking. This is not Dermatillomania. It is the same as me saying “Oh I pull a few hairs here and there so I must have Trichotillomania”. This type of self-diagnosis takes away from the seriousness of these disorders and does not accurately depict the reality of what a true sufferer goes through on a daily basis. I also worry that people diagnosing themselves with Dermatillomania might actually be suffering from Body Dysmorphic Disorder and it is important to distinguish between the two in order to receive the most relevant form of treatment. I hope you get the nerve damage sorted in your hand! I have nerve damage in my funny bone from picking with tweezers while twisting my arm and I know how painful it can be! Thanks again for writing in! 🙂

  2. The exact same nerve…the ulnar nerve is the one we call our “funny bone” at the elbow. It inervates into the hand and when irritated the pinky finger and the lateral (closest to the pinky) half of the ring finger are numb. My nerve is pinched about an inch above my elbow from picking the spot on my left temple. The doctor scheduled me for surgery to move the nerve. I cancelled the surgery last minute, because I know why if is irritated and pinched. I still don’t have the courage to tell the doctor

    • Yes that is exactly what I get too! It’s been flaring up again in the last few days. My doctor said if it kept irritating me surgery might be the only option but in the meantime she suggested a simple home exercise to try and get the nerve to move on its own… get a towel and twist it like you’re wringing it out of water and then repeat by twisting it back in the opposite direction. Perhaps check with your doctor if this could work for you? I forget the number of repetitions I was meant to do of them per day though. So are you worried that if you have the surgery, the nerve will just move back again because of the picking? Your doctor might be understanding if you explain the situation to him/her but I understand why you would be apprehensive about doing so. It’s a tricky one!

  3. You bring up lots of points here that I’ve also mulled over millions of times! Don’t be afraid to mention your thoughts on this disorder because, like Dermatillomania itself, many of us share these opinions but are too embarrassed/ ashamed/ worried to say anything. I get this too when I post something that is seemingly taboo in an already sensitive topic but I usually find that people agree with me to some degree- a lot of this is the nature of the beast.

    I have my own frustrations and sadness over people who say they have Dermatillomania if they don’t have the “marks to prove it”, so to speak. I’ve written about this here: http://www.skinpickingsupport.com/2013/02/06/my-skin-picking-worse-yours/ and touched base on it again when people try to relate to us, here: http://www.skinpickingsupport.com/2013/08/07/understand-claim/

    Your story brings up many new considerations though. You’ve experienced times of remission in less stressful times, something I haven’t ever unfortunately, so it’s interesting to hear your views on it. With your involvement in the community, where would you feel your place would be if you went into another remission? If I ever had a time of remission I’d say to myself that I was once where other members are, but it raises that question of the different severities and patterns of Dermatillomania.

    My legs are like yours, as you know, but I know there are people in the community who would be envious of my clear arms (barely visible scars are leftover from a time I picked at my arms and just randomly stopped without rhyme or reason) so I guess we do have to take everything with a grain of salt because we don’t know if pictures people have bravely put out in the forums are from their “worst” or if they too have been through times of remission.

    I think we overall should see it from the view, although it can still be difficult for me too, that if someone is bothered by their skin picking we should be there to offer advice and support. As advocates we may be able to help those who are in the beginnings of a full-fledged disorder and may be the key in assisting those who are engaging in this behavior to think twice about their grooming habits… something we never had. No matter how little, if someone confides in us individually or in a Dermatillomania forum we should be mindful that even one mark can be distressing and we must offer the same non-judgmental support to those with a lesser degree because they may have a better chance at reversing it.

    I’ll be sharing this on my Facebook fanpage tomorrow! xox

    • Thank you so much Angie for your comment! I reread the articles you posted links to and I felt that second one about understanding really nailed it on the head for me. I was really worried posting this article that it would come off as a “my skin picking is more severe than yours” rant which was not my intention but so far most people seem to get where I am coming from, which I am relieved about!

      My first remission when I was 17 years old was largely due to acrylic nails, smoking pot in times of stress (a bad habit to replace the picking) and a new relationship which was making me happy. As soon as I stopped the pot and took the nails off (both only lasted about 6 months) I ended up worse off than I had been before. The other two times I was still picking daily but I considered myself in remission because it was so mild compared to what it used to be that it wasn’t impacting me like it used to. Again sadly this only lasted a few months. If I entered remission again I would keep on advocating for this disorder but from a new angle, where I could show people that recovery is possible. That is where I am hoping to end up one day!

      I know it came across a bit like I was judging people on their photographs and I do admit that when I see someone in revealing clothing I instantly feel upset by how flawless their skin looks when they are claiming to be suffering as severely as where I have been, but then I reason that they may have used photoshop, certain lighting, etc. so I try not to make judgements on that. What is more upsetting to me and something I’m noticing a lot more of lately is people claiming they have derma (not just people I’ve met online either but also in person) and yet they cannot show me a single spot/mark on them. And they kind of stutter over their words and then say “oh I’m better now than I used to be” but in the same breath of air admit they’ve only been doing the behaviour for a few weeks or a few months, Googled it and assumed they had it. All of this I am understanding of until I start to share my story and they don’t understand why I don’t have many friends, why I cut myself off socially, why I have to put makeup on before I leave the house, etc. so I end up feeling more isolated and alone than ever before and this is why I think a sliding scale on severity would be fantastic because it would link sufferers up with those who are in similar struggles to themselves. I cannot relate to someone who only picks one spot every so often and isn’t affected mentally or socially by it – to me that is not Dermatillomania but rather normal grooming behaviour.

      Despite all of this though I have always offered non-judgmental support to other sufferers regardless of the severity of their Dermatillomania, it’s just sometimes I come away saddened and hurt by certain conversations where I feel judged by my severity even though I would never let it be known to them. And I understand someone with one mark can experience the same level of distress as someone with multiple marks but this is where that fine line between derma and BDD comes in and I think it’s important that one seeks further advice from professionals before diagnosing themselves with one or the other. Whilst their level of distress may be the same, the visibility of the disorder to others is different and the only thing I can compare it to is a “fork in the road” – we are travelling along the same road but only up until a certain point; when it comes to diagnosis/treatment/interaction with other sufferers that is where we part.

      Ooops this reply ended up a lot longer than I planned it to be. Sorry! I think a follow up article might be necessary to explain a lot of my points a bit better. Thank you again for commenting Angie and for sharing this post on your Facebook fanpage! Xx

  4. Dreams of smooth skin..

    Hi.. just wanted to let you know that I’ve found your story inspirational. I finished up a mighty picking and prying session tonight.. and finally decided to approach google with this, because I felt like a total freak. I never knew this was a disorder..probably because I didn’t want to know..It makes the reality of it so much harder and colder.

    I’ve.. been picking since I remember having anything different on my skin to pick at. Multiple reasons, multiple areas, multiple hours a day and into the night. I cut bangs the way that it hides the most from my face.. I use up half a bottle of concealer a month.. Am scared of the rain.. wear long pants in the heat when others are going out swimming.. I take sick days and close myself away from the world when it gets too bad…Walk with my head down…I bet these sound awfully familiar.

    How did I not know this was a disorder..

    And thank you for posting all the photos. It gives me hope.. that although my face is my worst worst worst zone.. it can heal to a point where makeup will cover it. And “skin regenerates every 7 years” is the best line I’ve heard in ages (though I’m positive it doesn’t fully work that way…). At the moment I still don’t quite have the willpower to throw out my handy-dandy arsenal of skin-carving tools, I’m going to try to gradually pick at it less. Cut my nails as short as I can, and file them harmless. I can fight this thing!! (I say this about twice each year, then give up and regress even worse within a week…) but maybe I can do it this time. Knowing I’m not the only one out there is huge…

    Thanks for everything you’ve written and posted, and keep fighting it. Disorders over a long length of time.. they never go away completely.. but they can get better, I’m sure of that much.

    GL

    • Hi GL,

      Thank you so much for visiting my blog and taking the time to write to me and share with me your story. Reading your post felt all too familiar to me as I do absolutely everything you do as well… including avoiding the rain and wearing long pants in summer. I am glad you discovered this is a disorder and that you’re definitely not alone in this! I also run a ‘Dermatillomania Support Group’ on Facebook if you ever want to chat with other sufferers. I am sorry I haven’t had a chance to reply to you sooner (super busy juggling the trio of work, study and parenthood but hey at least it keeps my hands busy!) 🙂

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