Luisa Freitas decided to create a Trichotillomania Lockdown Calendar to help raise awareness of her compulsive hair pulling disorder (Picture: Luisa Freitas)
We can all agree that lockdown is tough.
For those with poorly understood mental health conditions, it can be even harder.
Visual artist Luisa Freitas knows this better than most, as she struggles with a condition called trichotillomania.
According to the NHS, trichotillomania (or trich, for short) is a condition in which sufferers feel ‘an intense urge to pull their hair out, and they experience growing tension until they do’. It is not an impulse that sufferers can easily control, and there is no cure.
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While it is estimated that up to one in four people in the UK are affected by trichotillomania, it is unclear what causes the condition. It is, however, thought to be linked to stress, hormone changes, and to other mental health conditions such as anxiety and obsessive compulsive disorder.
With stress and anxiety being common triggers, the coronavirus crisis and associated restrictions have created a difficult environment for trich suffers.
Michelle Harper from Trichotillomania Support says: ‘Lockdown has definitely had an impact on the mental health of many people, and an increase in levels of depression, stress and anxiety could increase the urges to pull that a person with trich experiences.
‘Uncertainty about the future, finances, or a fear of becoming unwell, combined with lack of things to distract themselves with and many support services being unavailable, means that a lot of people are finding this to be a very tough time.’
Luisa, 27, has had trichotillomania since she was 11 years old, but prior to the UK’s first lockdown, hypnotherapy had helped her go ‘three blissful months pull free.’
‘Not only did I not pull during this time, but I also didn’t feel the urge,’ she says. But then, back in March, the first lockdown hit, ‘and I was back at it within two weeks.’
‘To be honest I was surprised by how fast I went back to my old habits, and quite ferociously as well, almost undoing all of the hair growth progress I had made. It’s very typical to have setbacks in stressful situations, but the quarantine months were some of the most difficult months I dealt with in terms of trich.’
Luisa started her new project to help her cope with the coronavirus crisis (Picture: Luisa Freitas)
At the same time, she was also trying to figure out ways to ‘maintain some level of sanity’ during the lockdown, and was thinking of potential projects she could do to pass the time.
‘I stumbled upon a vague note I’d made on speaking out about trich, and had been thinking for quite some time about coming forward about my condition to raise awareness,’ she says. ‘So I figured, what better time than now?’
She decided to create her Trichotillomania Lockdown Calendar, a diary-style blogging project that explores ‘the impact of the Covid-19 pandemic and quarantine on my mental wellbeing, focusing on its effects on my trichotillomania’.
Every day of the first lockdown, Luisa wrote a short blog post in which she spoke about her struggles with the condition, as well as the circumstances in her day-to-day life that caused her to pull more (or not pull at all).
Beside each post she also included a visual representation of how much hair she had pulled that day.
‘Trich took centre stage in my project because I wanted to reach out to anyone who might be suffering and let them know they are not abnormal for experiencing it, especially under the exceptional quarantine pressure,’ she tells us.
Initially, she found it to be a daunting task, but says: ‘the more diary entries I wrote the more comfortable I was sharing my reality with people’.
Some days were better than others, as tends to be the way with trichotillomania. In fact, there were some days where she didn’t pull at all.
‘These days made me feel really proud of myself,’ Luisa says, although they often took ‘an enormous conscious effort’.
The thing is that trich can be just as hard to manage when you’re calm or bored as when you’re anxious, and ‘in the same way that hair pulling can be caused by emotional distress, it can also be caused simply by muscle memory,’ says Luisa. So, ‘when you aren’t working and you can’t keep yourself busy,’ trich sufferers will often find they’ve been pulling without even realising.
Heavy pulling days can be upsetting, and Luisa started to notice how how much her overall mood was dependent on not pulling hair – ‘even if it was just a few strands’.
‘I realised I needed to change the mentality that my worth was correlated to not taking hair,’ she explains. ‘[This] was the first step to slowly learning to accept my condition and embrace the idea that I can be proud of myself regardless of the state of my hair.’
Luisa learned some other valuable lessons, too. For example, she realised just how much her lifestyle was affecting her hair pulling, and it particularly surprised her to discover a connection between hair pulling and sugar consumption.
‘The sugar connection relates to me on a personal level,’ Luisa says. ‘I have a problem with chocolate, and I didn’t realise that I was pulling more hair on the days that I consumed the highest quantities of chocolate. After realising this I tried to cut sugar as much as I could, and the difference shows.’
Beyond that, she says that the most important lesson she learned ‘was to admit that I have a permanent condition and that trich will always be a part of me’.
The project helped teach Luisa to value herself, regardless of how much hair she pulled (Picture: Luisa Freitas)
‘People with trichotillomania tend to be in denial and jump through hoops trying to justify its temporary status,’ Luisa says. ‘Acceptance is a long personal journey, finally being able to just be with the condition instead of fighting it has brought me huge relief.’’
Luisa believes it is important for awareness to be raised about trichotillomania, because it isn’t a well-known or well-understood condition. As a result, a certain amount of shame and social stigma surrounds it, and ‘hundreds of trichsters feel alone and confused, leading them to isolate themselves and not speak out.’
Luisa has noticed that on the online trich support groups she is part of, ‘dozens of users have come forward about their feelings of desperation and potentially giving up. Many others have also claimed that trich destroyed their relationships with family members, friends and partners due to their lack of understanding and support.’
She adds: ‘It is not only important but crucial to raise awareness about this topic and inform the public as best we can, to further break down the stigma around mental wellbeing and incentivise people to support each other.’
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