By Sarah Bristol
Like many people during this terrifying pandemic, I am in lockdown at home, in awe of the bravery and sacrifice of health care professionals caring for their patients in incredibly difficult circumstances.
Frontline to Sideline
I work in healthcare myself, but am unable to go to the front line to support the NHS as my health conditions mean that I am vulnerable to infection.
Being at home is not where I wanted to be. I was in the process of being redeployed to one of the emergency Nightingale hospitals that have been impressively constructed in the UK at breakneck speed.
My role was going to be assisting radiographers screening Covid-19 patients for lung masses, but now I have to remain inside, hoping and praying that colleagues and friends, some of whom are working in ICU, will be protected from this indiscriminate and cruel disease.
Rule Number One
I know in my head that by staying at home, I am potentially freeing up a hospital bed for someone else who may need it, but in my heart there is frustration with myself and a sense of guilt, not just because I can’t physically help, but because in my haste to be useful, I broke the first rule of being a carer – make sure that you are safe yourself.
I did not take my own health needs seriously, and that was irresponsible. Why didn’t I realise that instead of being helpful, I would in all likelihood have had a higher chance of falling ill and by rushing in would have potentially put myself and others at risk?
Over the course of the last few weeks, I have had ample time to consider this question as well as following daily reports about the importance of health care workers having the correct protective equipment. PPE and masks, especially, are very much front page news.
Masks have never been so visible, are sadly, much needed, and are often in dangerously short supply. Without them, health care workers are exceptionally vulnerable to the viral load of Covid-19; wearing a mask right now is essential for their survival.
The Other Mask
Autistic people wear masks, too.
We wear them permanently and invisibly in order to survive in a world that is often unsupportive and hostile to our different ways of communicating or social behaviours. Everyone occasionally puts on a mask or plays a part in order to cope with social anxiety or adapt to a new role, but an autistic person does it habitually in order to hide their true self for fear of mockery or abuse from others.
Late diagnosed-autistics like myself in particular have unconsciously turned this into an art form. I had half a life time of desperately trying to fit in, to be liked and accepted by my peers, all the time knowing I was different, but not understanding why.
Unaware of the social rules, I copied others in order to learn how to be, and in the process carefully constructed what I thought was an acceptable facade to present to the world. I spent so much time people-pleasing and striving to be agreeable, that my true self and my needs were hidden to others and to myself.
It was an utterly exhausting way to live, but putting on that mask so that I could face the world was an essential part of my survival.
An Expensive Way to Cope
This survival strategy has come at an enormous cost to my health and wellbeing as the amount of sheer energy that my masking needed resulted in my self-care being neglected. I have not treated myself with the same level of compassion that I would show to others, and as a result, have not looked after my health needs properly.
Apart from an impressive array of mental health conditions, I have had asthma since my 30s, and during this time also developed M.E. (also known as chronic fatigue syndrome) which wiped out ten years of my life and has left me more prone to viral infections.
I took my meds in an ad hoc manner, rarely being able to get organised or treating myself with enough respect to make sure I understood these conditions properly or taking the time to learn about how I could manage them.
I minimised everything and constantly felt like a fraud. I didn’t recognise or believe my own needs and having an invisible disability like autism often meant that I wasn’t believed by others when I disclosed my diagnosis.
Other people’s needs were far more real and important than mine, and fitting in with them and their expectations was my priority– and so, the agreeable and compliant mask stayed in place.
It took a concerned friend pointing out the reality and severity of my health conditions that made me realise that instead of volunteering to treat Covid 19 patients, I should actually be shielding at home and looking after myself. My GP confirmed this and made it plain that for me: going to the front line would be too dangerous, and I have been in isolation ever since.
It has taken this awful pandemic for me to come to the realisation that my constant masking has exhausted me in body, mind, and spirit. It has led me to ignore my own health needs and has separated me from my true self.
My carefully-constructed facade has started to crack as I have been faced with the pain of my self-neglect. In it’s place, however, is an emerging and wiser me that is taking steps to prioritise self-care, and in doing so, hopefully to discover and embrace my autistic self without feeling the need to camouflage.