This Tourette’s Awareness Month, I am looking at the exhausting effect of masking on women with Tourette Syndrome and how employers can help reduce feelings of stress about ticcing at work.
Musician Billie Eilish has spoken about Tourette syndrome, saying that although they are “things you would never notice”. The tics she experiences as a symptom are “very exhausting”. More than 300,000 children and adults in the UK have a diagnosis of Tourette syndrome. The tics that are often a symptom are thought more likely to increase in adulthood for females.
Tics may present as involuntary motor movements – a jerk of the head or neck, for example – or as vocalisations including throat clearing or using certain words and phrases.
Many workplaces do not have the necessary support in place to help employees with Tourette syndrome feel comfortable. Masking a symptom like a tic can be exhausting, but unmasking it in front of work colleagues also feels extremely daunting. Either way, this extra stress can affect daily working lives, not to mention the entire careers of neurodiverse people.
My research involved surveying 89 people and separately interviewing 12 about their experiences as neurodivergent women in employment. I found that, although workplaces in general can benefit from awareness and acceptance of neuro-minorities, these women haven’t always received the support they need to be themselves.
One of my interviewees, Riley*, is an ambitious master’s graduate employed by a London-based PR company that runs “high-profile events”. Riley was diagnosed with Tourette syndrome in early childhood. Family and friends are aware of Riley’s neurodiversity, but Riley themself has chosen not to disclose the nature of it to their employer.
This is because Riley is certain that explaining the nature of it to their employers would have affected, first of all, whether she would even be employed, but also, second of all, what she would have been allowed to get involved in due to some serious lack of understanding about the condition.
Many neurodivergent people face this barrier at work. They are often fearful of the impact of sharing details about their differences and consequently choose not to disclose to employers and colleagues. This fear is often driven by stigma underpinned by misinformation about the abilities of neurodivergent people.
Of course, it’s sometimes possible to mask or camouflage tics. But Riley goes to great lengths to suppress theirs. They concentrate hard during meetings to disguise motor movements or physical expressions of tics into gestures. On video conference calls, Riley sometimes focuses on moving the tics to parts of their body below the frame of the video window so the movements are not visible to colleagues when working from home.
Masking “tic attacks” is tiring, but Riley believes it is worth it for their career.
Emotional labour
Many of my research participants said they needed more space and understanding from co-workers to feel comfortable about ticcing or “stimming” while at work. Stimming activities include rocking or fiddling with objects and are thought to be coping mechanisms, a means of self-soothing.
When a person finds themselves hiding how they feel or suppressing who they are to fit in at work, they are performing extra “emotional labour”. But while this is exhausting, unmasking tics can feel risky. Asking employers for workplace adjustments may not be well received, and those who ask may be regarded as an inconvenience.
People with Tourette Syndrome are often labelled as having an ‘attitude problem’, because their tics can manifest as shouting, swearing and gesturing; other people often misunderstand this behaviour as aggressive or rude, which automatically puts the person with Tourette Syndrome at a huge disadvantage.
This video, ‘I Swear’ illustrates this situation very well.
Another interviewee, Kimberly, is employed in very different circumstances to Riley. She works in a learning and development setting as part of an understanding team with other openly neurodivergent people whom she describes as “lovely”.
Kimberly is always learning more about her Tourette syndrome and shares information with colleagues about her tics. Since they can emerge or retreat at different times in life, she especially shares the “new ones” with her colleagues.
There is a buildup of tension behind a tic that is often relieved by expressing it. But Kimberly does not usually have to suppress a “tic attack” at work. She actually chooses to make light of them. For example, she has recently developed a tic in her ankle, which resembles a kick, and of which she says:
I kicked the cupboard door, and so I sent a picture of the damage to the group to say: Look, I’m a liability!
When people with Tourette syndrome can release and unmask their tics in this way, they expend less energy because they don’t have to cover them up.
But even though she can express herself freely at work, it’s still not plain sailing for Kimberly. She uses holidays to take time off work when she is worn out and needs to “reset”. Even in an understanding workplace, Kimberly’s energy levels are depleted as she tries to keep up with more general workplace norms and ideals.
Kimberly also worries about what the future holds for her and says she regularly asks herself why life is so hard. She has grave concerns about the future:
What am I going to be like when I’m seventy? I’m going to be a broken heap in the corner.
Unfortunately for many neurodivergent people, getting the kind of full acceptance and support at work that they need to thrive seems a long way off. Riley doesn’t see their managers undertaking neurodiversity awareness training or becoming more tolerant towards people with such differences, any time soon.
When asked what conditions might make it feel ok to speak to their boss about their health status, Riley says, “I might say something in my exit interview.”
How Workplaces can make it ok to be different
I have looked at how workplaces can reduce feelings of stress about ticcing at work.
Workplaces that are communicative and open to differences enable neurodivergent employees to thrive, not just survive. Neuro-inclusive measures are not necessarily expensive. For example, it could include training as part of equality and inclusion initiatives. Employers can also ensure their company policies and practices are kept up to date and are aligned with the needs of all of their employees.
While many employers still have a long way to go to enable neurodiverse people to thrive at work, there are things we can do. I would suggest connecting with organisations, such as Tourettes Action, for resources, peer support, and educational materials.
If you feel you can, it is also worth trying to educate your employers or colleagues to ensure understanding, reducing the social stigma that can increase tics, and working with a coach or an inclusion strategist can help to improve workplace practices.
If you can identify your triggers by tracking situations that make tics more pronounced (e.g., fatigue, anxiety, boredom), it will help.
Channelling Energy is also useful, as engaging in sports, music, or creative hobbies can reduce stress and have a positive impact on tic frequency.
Education is everything – the more employers or educators understand the needs of people with neurodiversity, the more supportive environments will be created.
If you would like some help finding your way forward, get in touch for a free initial conversation here.