Today’s interview is with Sophie, talking about her trichotillomania. Until I spoke to Sophie I had very little knowledge on this condition so I’m really pleased that I could chat to her and educate myself.
In case you’re new to my blog, I typically talk about my own skin condition (rosacea) but started this How Do I Look? series last year so that I could talk to others in the skin positivity community. I wanted to amplify voices, educate myself and others, and show the many faces of skin positivity. I hope you find these interviews as interesting as I do. There are links to all the previous interviews at the bottom of this page.
Tell me a little bit about your Trichotillomania?
I can’t remember when I was formally diagnosed, but I think I have had trichotillomania since I was about 3 years old. Trichtotillomania is a hair-pulling disorder that falls within the body-focused repetitive behaviour group (or ‘BFRB’). For me, the disorder manifests with me pulling out my eyelashes and eyebrows. A lot of people used to say it was similar to OCD, but instead of having to do X for fear of Y it is more like you need to do X because the urges to do so are uncontrollable. It is action-based, rather than consequence-based. Although it is an anxiety disorder, I still struggle to this day to pinpoint my triggers and figure out why exactly I do this to myself. I think at this point it has just become my default coping mechanism for everything and anything and is more habitual! People often use the phrase that ‘they’re pulling their hair out’ as a synonym for feeling stressed, but it is actually a real, legitimate disorder that affects a significant number of the population… it’s just very few people actually know it!
Growing up, I never knew anyone else with this disorder. In fact, I only first met someone else with this in my early twenties (I am now 25). It was an incredibly lonely and isolating time, not helped by the stigma around mental health in general and especially not helped by the physical baldness. I had an idea that others ‘like me’ existed as, when I was a child, my Dad found an internet forum which had a chart showing the amount of days people had gone ‘pull-free’, but it still seemed like a secret internet group and didn’t help me feel any less ashamed of what I did to myself on a daily basis. As I reached my mid-teens I started Googling the disorder more, and found some charity-run sites that confirmed to me that I definitely wasn’t alone. At 18, I started my own website, initially to share my love of beauty, but after a couple of years I had a lightbulb moment and something – I’m not sure what or why – switched. I published my first post about trichotillomania (an almost ‘coming out’ post explaining what it was and my experience with it), and the rest is history. I discovered a whole online community that my blog allowed me to tap into and I have met some incredible, supportive, like-minded peoplefrom across the world as a result.
What are the common misconceptions, comments, or questions about trichotillomania? What do you wish people knew about trichotillomania?
I feel as though there is still very little knowledge and understanding about the disorder; both in the general population and medical community. One huge misconception is that we choose to do this to ourselves, like we want it. The opposite is true. This disorder has the potential to destroy and to make you a shell of yourself; encouraging you to hide from the world and hold yourself back in every way. There is no way that someone would choose that life. The urges to pull out your own hair are uncontrollable and as though there is a constant internal battle going on: you’re fighting against yourself hourly, daily, weekly, to stop yourself. It’s mentally and physically draining to fight with yourself that frequently. Often, people go into a trance-like state – how are you meant to stop yourself then?
Another thing I got told a lot is ‘why don’t you just stop?’ It is not that easy – if it was, we would all be cured! It is not just a bad habit, like biting your nails. It is an anxiety disorder. There’s more information HERE for those who would like to learn more.
If you have consulted the medical community for your trichotillomania, how were those experiences?
Every doctor’s appointment I have made in relation to trichotillomania involves me spending the majority of the appointment explaining what the disorder is. By then, your time with the doctor is almost up! Especially thoughout my childhood, most doctors had never heard of the disorder and therefore had no idea what to suggest in order to help me. It is incredibly frustrating and you do end up wondering what the point is in seeking help. It again adds to the isolation.
I have tried numerous therapies and anxiety medications, however none have stopped my hair-pulling. I know that anxiety medication does help many people, however, and Cognitive Behavioural Therapy (CBT) did help me understand the pattern of my disorder more. It was probably the best out of all of the therapies. I’ve recognised that it starts with feeling my brows and lashline; I latch on to anything that feels different (e.g. spiky hairs growing through, ones that are longer that others, ones that are at the edge of a gap) and it needs to go. I cannot focus on anything else or clear my mind until I have pulled them. The anxiety builds and builds until the moment that hair is gone.
How does your appearance make you feel on a day to day basis?
Now, my physical appearance does not bother me as much. However, I used to be so ashamed and embarrassed about how I looked. I felt so ugly and the self-loathing was immense. People would stare and I got the occassional comments; it’s not ‘normal’ to see someone without eyelashes and eyebrows. People at school questioned why I had gaps in my lashes, and when I discovered make-up to cover it. Teachers told me off for my eyeliner and sent me out of class to remove it, which obviously filled me with dread – I remember spending one class just hiding and crying in the toilets for fear of anyone seeing my bald lids. I denied to classmates that I had a disorder and claimed they just ‘fell out’ because I knew people wouldn’t understand it because it was something I did to myself. It became like a dirty little secret that I would try to hide.
I felt ‘other’, and to be completely honest, I looked in the mirror and saw some strange, bald, alien face looking back. I hated how I looked, and I hated myself even more for doing this to myself. Because it’s not like you can blame a separate illness: although you don’t choose to have the disorder, you feel a level of responsibility and huge amount of guilt for the pulling because, ultimately, you do it to yourself.
Using make-up to cover the baldness did massively help me, and I soon became used to my routine of drawing on brows and applying false lashes. It made me feel like ‘me’, like how I ‘should’ look. With time and a long journey of discovery, I have come to accept the disorder as part of who I am, and I am far more comfortable with how I look. Instead of hating my appearance, I try to see past looks and focus on other things about me that I value. There is far more to us that simply how we look, and I try to remind myself of this on a daily basis. I still have my moments of self-hatred, but learning to love yourself for who you are (as cliche as that sounds) has truly helped me. I still pull my hair out on a daily basis, but I don’t berate myself for it. Minimising those negative emotions has been freeing.
How do you feel about make up/false eyelashes etc?
Make-up has helped me a lot, and I spend a lot of time trying out new products and reviewing them with trichotillomania/baldness in mind. When I felt so different, strange and ‘other’, make-up helped to me feel comfortable in my own skin. I used to feel like I ‘needed’ it to be me, but now I realise it was emotional reliance and a shield against nasty comments from other people. That said, I still wouldn’t leave the house now without a bit of eyeliner as deep down there is still that fear of judgement from others.
I had my eyebrows microbladed a few years ago and I think that was the catalyst for a change in attitude towards myself. It took so much pressure off me to get my make-up perfect, as I knew the most difficult part (drawing brows on from scratch) was no longer an issue. It completely changed my life!
What are your thoughts on the media visibility of trichotillomania?
I know that Sam Faiers has recently spoken out about it, but apart from the odd article every couple of years, it is barely mentioned in the media. I think that is why social media and blogs have been so powerful in forming the community that now exists. We have seen the lack of awareness and visibility, so have taken things into our own hands to discuss our experiences, share advice, build each other up, and raise awareness.
How do you deal with bad days?
I have had the disorder so long that it’s hard to differentiate ‘good days’; and ‘bad days’- it just is what it is. I do have days where I will just give in and pull loads of lashes out. I get disappointed in myself, but eventually shrug it off. I’ve been there so many times before and remind myself that it doesn’t matter that I’ve pulled hair out – it will grow back and there isn’t anything I can do about it once I’ve pulled them! I have found that if I set myself a goal of (for example) not pulling for a month, I am setting myself up for failure. I try not to put any pressure on myself. Yes, I do still feel annoyed with myself, but I don’t hit those huge lows that I used to. I’ve only let myself down – no-one else – so I need to be kind to myself about it.
In the past few years there have been more conversations around the link between skin and mental health, what are your thoughts?
I think that it’s amazing that there is more conversation – it’s huge progress from what things were like when I was younger and looking for answers or people like me. But I still think we have a long way to go. There is still judgement and misunderstanding that makes us feel ashamed of how we look and we need to keep raising awareness to break down these stigmas.
Have any positives come out of your trichotillomania?
I have met loads of incredible people who also battle the disorder who I would not have met otherwise. These are people who help build me up and reinforce a positive attitude and I am forever grateful for that kindness that the community circulates.
I also think that living with this disorder has massively shaped who I am today. It has made me strong, resilient, understanding, and compassionate towards others. I think I empathise more. These are all things that I am proud of and I don’t think there should be any shame in celebrating that you are proud of who you are!
Do you have any top tips for living with trichotillomania?
The main tip I would give is to please be kind to yourself. No-one else is going to be as good to you as you can be to yourself, so try and give yourself a break. Instead of feeding the cycle of guilt, upset and frustration, pause and reinforce the positives. Once you start being kind to yourself, your battle will become easier.
Accepting trichotillomania has also helped me (as I’ve mentioned above), but I know this is a journey and not something everyone can instantly do. On a practical level, make-up, false lashes, microblading and simply reaching out to the online community of others with trichotillomania are all helpful. Even if it’s just messaging someone and saying ‘I’ve had such a bad pulling day and I feel awful’ – to have someone replying, there to support you and knowing exactly what you are going through is huge.
Want to hear more from Sophie?
Read the other posts in the How Do I Look? series here:
- MICHELLE talking about her scars;
- SOFIA talking about her acne;
- NATALIE talking about vitiligo;
- SUSIE on her Telogen Effluvium (hair loss);
- AMY on her port wine stain birthmark;
- GEMMA on psoriasis;
- AMARA on eczema;
- GRACE on her scars;
- JUDY on her sensitive skin;
- SHANKAR on his Vitiligo;
- and P. on their Acne Conglobata
Lex
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