Autism, anxiety, Personal Stories

My fear of being open about the struggles I have been facing

I have previously written about the freedom I felt during lockdown, and how the anxiety I had been struggling with for years virtually disappeared. Since then much of lockdown has eased and the world is starting to open up again - with a degree of starts, stops and backtracks - in line with a changing R number.

With this has come the compulsory wearing of masks when using public transport and going into shops.

This is something that I struggle with. I don't like anything on my face. I seldom wear make up except for special occasions, and if I do wear make up I will wear a light base as I don't like the feeling on my skin. When wearing coats and scarves I don't like my mouth to be covered, even in the middle of winter. The thought of having my mouth covered over and my hot breath on my skin gives me the shivers.

I hadn't really paid much attention to this is the past, as it was just a personal preference and was never "a thing" that stopped me from doing anything. However over the past few months I have become stuck on the idea of wearing a mask, which has been a bit of a surprise to me. Every part of my body resisting and my mind saying no. I tell myself to stop being foolish.  I keep telling myself it is simple, I just need to put it on. That I can try it gradually and desensitise myself. But try as I might, I just can't bring myself to do it.

This has left me in a dilemma about what to do, as I can't ignore it for much longer. I figure that I have 3 options.

Find a way to wear a mask, which fills me with dread but will mean that I can travel and go into shops / other locations

Go out with out a mask, which will make me stand-out with a need to explain to others when I am challenged about not wearing a mask

Avoid locations requiring a mask, which means avoiding most places and restricting my movements outside of the house

None of these options seem particularly appealing to me, and it has made me question why I am struggling so much with the thought of going out without a mask and wearing a sunflower lanyard to indicate a hidden disability. After all I have been open about talking to people about being autistic, and am happy to talk to others about my struggles and the support/ adjustments that I need. I have realised that whilst I may speak openly about being neurodivergent, I carefully choose who I talk to and the control of who I do/ don't tell lies with me. Wearing a lanyard means telling the world, without any pre-assessment of how they might respond or react to me. Which is unsettling.

And it would appear my concerns are justified, as I have read many news articles of people who are abused or attacked for not wearing a mask in public. In each case the victim has called for there to be more understanding of those who are exempt. I recently read a report by Achievability which noted that 73% of the neurodivergent choose not to disclose due to a fear of discrimination, and almost 50% who have disclosed have regret at some point about having disclosed.  

This is why creating a culture of understanding and support is so important for the neurodivergent and those with invisible differences, so that they don't need to struggle in silence due a fear of what may happen if they chose to speak up about their struggles. Until this happens there will continue to be many who, like me, are weighing up their options about a difficult situation and can't find a solution that works for them.

As we all adapt to life with Covid-19, masks and new social expectations - I would like more people to take a moment to think about those who might be struggling in silence and are concerned about speaking up for fear of being judged / stigmatised / discriminated / abused. The way in which we choose to speak about our expectations of others and our judgement of behaviours we don't understand can make a big difference in creating safe spaces for others to open up. Next time you see something you don't understand, try asking before judging.

This is something I plan to do more of as I start a new role and get to know my new team whose behaviours can be a little baffling to me at times. I will also be trying to venture out close to home to try out my exemption lanyard which arrived in the post this week, in the hope that my fears of judgement and harassment are nothing more than a fear.

If you are interested in sharing your neurodiversity related experiences, insights or stories via Me.Decoded, then please get in touch.

Author image

About Helen Needham

Helen is the originator and founder of Me.Decoded. A passionate advocate for Neurodiversity, - diagnosed as autistic in her 40's after a lifetime of feeling like she was on the outside looking in.
  • England