During Covid-19 we've heard the concern about the impact the pandemic is going to have on people’s mental health. It’s enough to make you want to pull your hair out. I have found myself thinking a lot about people who literally pull their hair out. People with trichotillomania. “Tricka what?” you ask. Trichotillomania comes under the umbrella of Body-focussed Repetitive Behaviour Disorders.
Treatment of trichotillomania can be hard to find, but people find ways of managing the disorder and living with the impact it has on their lives. People with trichotillomania go to great lengths to disguise the damage from their hairpulling, and many find it incredibly anxiety-provoking to tell another person about their experience or seek help.
Trichotillomania is an enduring mental health issue characterised by an overwhelming urge to pull out your own scalp hair, eyelashes, eyebrows, or other body hair.
Trichotillomania has a tremendous impact on the lives of people with it. It affects far more than physical appearance. Low self-esteem, poor body image, increased feelings of depression and anxiety, isolation, loneliness and fear of intimacy can be common. These experiences, in turn, increase the urge to keep pulling, and so continues the cycle of trichotillomania. More damage occurs from the hair pulling and the self-hatred continues – “look what I have done”. Shame, guilt, further withdrawing and further isolation.
Trichotillomania affects both men and women, but it seems that women are more likely to seek help. This makes sense when we look at the emphasis on hair as an expression of feminity in our society. For both men and women, our hair can be tied up with our sexual identity, how attractive, empowered or liberated we feel - characteristics that people with trichotillomania don’t often feel. There is a deep relationship between hair and self-esteem; we know the saying, “bad hair day”, the day where everything seemingly goes wrong. Well this can be every day for someone with trich.
Long eyelashes and perfectly shaped eyebrows have also made their mark in the beauty industry, compounding the “ugliness” a person with trichotillomania may feel. Hair, eyelashes, and eyebrows are features that attract attention and compliments. The very features that people with trichotillomania try to avoid attacting any attention towards.
People with trichotillomania live with the fear of being found out and can go about their day feeling very worried that someone might ask them, “Oh what happened to your eyes?”. If someone is behind them, or standing over them whilst they are sitting, they wonder, “are they looking down at my head, has my pony tail moved, can they see my bald patch?” Or will someone realise that they are wearing a wig and ask? Please don’t ask. Conversations about hair and beauty are also painful to sit through. This fear interferes with relationships and how people with trichotillomania connect with others.
I developed trichotillomania before the age of 10 and those days of having no eyelashes or eyebrows, and wishing that I could have been admitted to hospital to have my hands tied down so that I could STOP are behind me. My journey of recovery has been a long one and I know I will never completely be free of it, but now there is no secrecy, or negative meaning that I attach to this condition.
Now when I stroke my eyelashes and put my hand down, I'm reminded that the world has sometimes been an unsafe place for me and this feeling will never completely go away, but now my damaged nervous system reminds me to take care of myself and tend to my needs. Something that was once a source of pain is now a resource I use to care for myself.
During the pandemic, I have been thinking of people with trichotillomania who are perhaps not as far down the recovery journey, and might be in the depths of their worst experience trichotillomania. I wonder about how the cycle of trichotillomania may be playing out during COVID-19 and the lockdown.
Killer virus, don’t touch your face, don’t touch your eyes, use sanitiser, wear a mask, wash your hands, stay home. Killer virus, don’t touch your face, don’t touch your eyes, use sanitiser, wear a mask, wash your hands, stay home. Killer virus, don’t touch your face, don’t touch your eyes, use sanitiser, wear a mask, wash your hands, stay home.
Messages like this are bombarding us daily, hourly, on social media, on the news, and in the papers. As with other Body Focussed Repetitive Disorders, like skin picking (excoriation) disorder, people with trichotillomania consciously and unconsciously, impulsively and unthinkingly touch their hair, face, eyes and mouth hundreds of time a day. Sometimes no amount of will-power can help them STOP. They may already feel flawed as a human being, and the challenges of living with trichotillomania in the midst of a pandemic may only be adding to their frustration and fear around being unable to “just stop” pulling.
I feel for the children with trich and their parents during this pandemic. Often parents of children with trichotillomania misunderstand the condition and just want their children to STOP. The messages during the pandemic of don’t touch your face and wash your hands will be increasing the anxiety and tension within these families. They might feel naughty and responsible for stressing their parents during the pandemic.
As an adult with trichotillomania you may be fearful of getting COVID-19 because of how much you touch your face throughout the day. People who pull their hair often stroke the pulled hair on their lips and some chew it. The fear of contaminating oneself with COVID-19 because of bloody trichotillomania is real.
If it was that easy to put your hands down, if it was that easy to stop pulling, people would stop! But it’s not that easy. Saying “just stop” is so unhelpful and now it’s broadcast every day. Don’t touch your face, wash your hands. It’s like saying to a person with schizophrenia, “oh just ignore your voices”, or a person with and eating disorder, “just eat something” or someone who is depressed, “just pull your socks up”.
COVID-19 is likely having an impact the cycle of trichotillomania. People with trichotillomania often isolate themselves from the world, particularly at times when they have significant hair loss. It’s a catch 22, because having to be in the world can help with managing the pulling. People with trich spend lots of time on grooming and some are so creative with how they disguise the impacts of this disorder to the world.
I have this dreaded fear that people now stuck at home will mean hours of pulling, and as they have fewer reasons or external cues for leaving the house (to go to work , for example). People living with trich can stay hidden at home for longer, further increasing the severity of their hair pulling, and the consequent hair loss, depression, anxiety and sense of worthlessness.
Sometimes people with trich will do their make-up, put their eyelashes or brows on, do their hair, tie it up or put a wig on as a preventative measure – it’s a bit like putting up a barrier between your fingers and your hair. They say, “I’m ready now, I won’t touch my face or hair”, but that’s when they have somewhere to go. I suspect some people with trichotillomania have been caught out, working from home. Logging in late for meetings because they couldn’t stop pulling or had forgotten to put their wig on for the dreaded zoom meeting. Will it be during the pandemic that their secret will be discovered?
Washing our hands so often is a problem. “Did I get sanitiser in my eye, I can taste it in my mouth, oh my hands are bloody wet and I have smudged the eyeliner disguising my bald eyelids, now I will have to do my make-up again”. Then the pulling begins again and more damage is done before the grooming is repeated to stop this relentless cycle.
Now some of us have to wear a mask. If trichotillomania was a disorder of the nose or mouth, a mask might be a blessing in disguise. For people who pull their eyelashes or eyebrows, it will be only their eyes that are seen from the mask, becoming the main focus from the perspective of others. Those who pull from their scalp might be conscious of taking a mask off and on again, as they have groomed their hair “just right” to disguise the bald patches and god forbid if the wig moves!
Perhaps there are some advantages to COVID-19? The 1.5 metre physical distancing means eye contact is perhaps a bit safer and bald patches may not be as visible from afar. It’s the isolation that concerns me most for people with trichotillomania.
People with trichotillomania experience enough internal loneliness without the world being shut down as well. As hard as it can be to look others in the eye, or go outside on a windy day, it’s so important that people with trich keep doing these things to stay connected with others and do activities that bring pleasure and meaning – despite the trichotillomania.
Social isolation is the optimum environment for the cycle of trichotillomania. I wonder whether some people with trichotillomania may have thought that the isolation would be an opportunity to get well and have some respite from the world. I hope it has been a sanctuary for some but I fear that the pandemic has exacerbated the impact of trich for others.
The lifting of social restrictions will be a further source of worry for people with trichotillomania, particularly if they have done a lot of hair pulling in isolation, and their anxiety and depression is tenfold. For some, reconnecting is not necessarily something to look forward to but could be laced with dread.
Trichotillomania is not an addiction and it’s not “just a bad habit”. It’s a serious mental health issue that can be a lonely battle. Its multi-faceted impact is not well understood by many others. It’s not about hair and the damage done, it’s much deeper than that. People with trich have a story to tell, often a story of pain and hurt but their pain is also their gift. People with trich are on a journey of self-acceptance and there is light at the end of the tunnel but perhaps not through COVID-19.
People with trich have learnt to live in isolation and with uncertainty. The pandemic will be another hurdle, a part of their journey that they will hopefully come through. The intricacies of their day to day are challenging at the best of times without having to navigate a pandemic. Strength to my fellow trichsters in this very difficult time.
Guest blog by SANE staff member.
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