Masks and costumes at work – An essay about coming to work chronically ill

Arguably all of us wear some sort of mask or costume at work, but what are you wearing yours for? I don’t mean an N95 mask, although that can come in handy. In this essay I share my experience wearing masks and costumes in the workplace as a person with disabilities.

I’ve had a diagnosed chronic illness since my teens and received significant additional diagnoses in adulthood. This has involved many ups and downs of emotions and medications and symptoms and pain and experimentation. With an auto-immune condition, ADHD and a couple of sports injuries in the mix I spend most of my days with a level of pain and varying degrees of mental discomfort. Getting sick is just normal for me, business as usual. People close to me have become used to this as a fact. These days I make a point of sharing this with colleagues or new friends at some point, because it’s a big part of my life and something that can be concerning for people.

When I look unwell, I probably am. When I look injured or in pain, I probably am. I’m sick a lot. This year I spent a period of 8 weeks almost constantly unwell with colds, a chest infection, and a few dashes of flare-ups of my auto-immune condition. That time it wasn’t even the ‘rona, just ‘normal’ illnesses and a vicious cycle of my usual auto-immune challenges. I took time off when I needed time off. I scaled back on commitments as best I could. But for the most part I could still work, was fully capable of logging on to a computer and doing a good day of work.

This recent extended period of illness was unusual even for me. At least it hadn’t happened for a while. Aside from needing to quickly rationalise and rethink work and other commitments to ensure I could get well, I found myself explaining a lot more than I usually do. Explaining either because I was asked, or because I felt the situation warranted me explaining something. This is where masks come in handy.

Returning to a world where wearing medical masks are the exception and not the rule has been interesting for me. I didn’t race back into the world like a lot of people I know. I sat back in my bubble with my mask and waited until it felt safe. I’m fortunate that I have a job where I can work from home, and can continue to do so for the most part. There was a time where my only choices were going to work or taking sick leave. This has meant times where I have burned through sick leave and had to use other types of leave. And times where I have come to work with great difficulty, unwell, often in pain, because I could not afford to take leave.

These days I wouldn’t come to work if I was at a level of illness where I was having to actively manage pain and discomfort, because I can do that at home. But I do still go to offices when I’m unwell. And I work when I’m unwell all the time. This is where masks come in handy.

Types of masks I wear a lot

• Make-up
• Medication
• Humour
• Clothing and accessories
• Calendar

I have been wearing masks to work for as far back as I can remember. Make-up is obvious in it’s obscuring power. Covers all manner of sins. Hiding illness is not the only reason I wear make-up. I love a good cosplay. In a work context though the Make-up mask is a preventative measure that stops a common comment I receive “you look sick, are you okay”. A well-meaning comment that when received frequently in a day and then over a period of time has caused me to accumulate an arsenal of foundations and concealers and bits that help me mask the paleness, the dark circles, the skin conditions that prompt the question.

It’s about more than just the comment, it’s what the comment suggests. That I shouldn’t be at work if I am unwell. This is something that I wholeheartedly agree with. People looking unwell is the easiest way to identify who should be at home looking after themselves, and not sharing potential germs with their colleagues. I wouldn’t want to stop people being concerned about the health of others. Nor would I encourage people to hide their contagious flu and trot on into the office. But for me, it is easier to slap on a layer of make-up than to have to explain my ill appearance. Easier still to have that layer than worry what people might be thinking. To have a layer of confidence that I can come to work do my job without people thinking I am not capable of working that day.

Medication is the most common mask for me. Helps me have a maintenance mode for my illnesses. Before my auto-immune diagnosis I spent years being ill and not knowing the cause. Getting worse over time. Bouncing from specialist to specialist. Test after test and then medication after medication before reaching the point where I had medications to keep illness at bay, or under some form of control. Supported by other medications which could be relied upon on the occasion where I did get unwell again (have a flare-up).

I am very flippant about medications. One of many coping mechanisms. I’m the walking pharmacy. I rattle when I walk. I’m a pill afficionado. While I take most of my medication away from watching eyes, it does have to happen in front of people at times. The medication mask helps manage day-to-day symptoms. I can present at work without pain, with freedom of movement, with an acceptably healthy appearance of my body and skin, thanks to medication. I reflected recently that I recall spending the moments before many major speaking engagements with a pre-game line-up of tea, pain-killers, lozenges, face powder and fresh air, getting ready to go on stage to show my ‘best self’ and hide the fact that illness lurking under the mask.

Someone once said of me that I have a ‘self-deprecating sense of humour’. I know I use that humour as a mask. I do it unconsciously for the most part, only visible in hindsight. But I can see that it comes out as a way to deflect or even get on the front-foot when I’m not well.

I use it to:

• Make light of illness or pain
• Joke about when I can’t walk properly or take stairs
• Deflect when I need to take medication
• Get on the front foot about paleness or dark circles

I wonder what the objective readers opinion is on ‘make light of illness or pain’. I read that back and question it myself. Should I make light of it, should I not just be honest? My own experience tells me that I can’t just be honest most of the time. Too much honesty is stifling, it gets in the way. And making light of it is not hide things that are serious, but to me and others to focus on the present. When illness becomes your day-to-day you get used to it. Partners, family, friends, colleagues get used to it. Humour helps us on the path of ‘getting used to it’. Easier for me to share the information, but also (based on some feedback from a trusted source) easier for the person hearing it. I also think it helps me set expectations for those around me That expectation being that mostly I am okay and if I’m not I will say so, and I will say so in a serious manner.  

Clothing is a brilliant mask. Along with accessories, clothing can be a mask that sends a message. Arguably it is just a mask that sends a message, but I’m not here to talk fashion per se. Dressing for “work”, pulled together to the level of corporate which is appropriate for wherever I happen to be working, telegraphs belonging and confidence. If I’m unwell, the work costume shows I am here to work, I mean business. Maybe people won’t notice I’m not well.

At times the mask is more of a show, an obvious mask like for Halloween. If I wear headphones it can be to focus, to manage sound sensitivity, to avoid talking to people if my voice isn’t strong. If I wear a medical mask it could be because I am sensitive to getting sick. Sometimes I might have a cough or sore throat. I find the medical mask telegraphs that I’m not feeling great  or at least that I would  appreciate you keeping a distance from me.

Sometimes the clothing mask is a contradiction. The masking hides things, but is also a message about what is hidden. A hoodie instead of a jacket. A loose dress instead of a fitted one. Sneakers instead of heels. These masks might simply say I am having a casual day, which is great. But their functional purpose is to hide pain, disfigurement and assist with discomfort.

Finally I come to the calendar mask. This is one which I have recently been using in anger. Sometimes in literal anger. The calendar mask helps me at work because I can block out time for:

• Rest breaks and taking medication
• Lunch breaks
• Low periods where solo work is more effective than people-interaction
• Appointments
• Illness, when it happens

A day can become full of meetings very quickly. This is something which isn’t a great outcome for most people. Managing my calendar has become a critical tool in managing chronic illness and neurodiversity. Back-to-back meetings, context switching, skipping breaks, working long hours are all things that can take it’s toll very quickly. This might lead to me being exhausted for an evening and unable to enjoy personal time. Or it might turn into a doom loop where I end up sick anyway. Blocking times in my calendar allows me to be more effective. Protecting that time is difficult but the calendar is the first line of defense, and one of several including ensuring my colleagues know how I manage my calendar, standing up for myself when I need to protect time, working in a place that supports flexible working.   

When I chat with people about this topic and share these aspects of my life, I mostly find people are able to relate. They empathise because of their own experience. We all have a need to wear masks and costumes. I know this, and I agree. They have a purpose for everyone. The difference is only apparent when you take the mask away. When you see what the consequences are. A mask that is useful for one person is life saving for another. A mask that helps one person be more effective is helping one person function when they otherwise couldn’t. A mask that is a convenience for one person is a protection against judgement or discrimination for another.

I’ve been thinking about how this could be categorised, visualised, rationalised. My attempt to organise this now feels at odds with the flow of the rest of this essay. But I’m okay with that. Because I have more I want to write, at another time.

Masking	Physical	Digital
Appearance	Make-up Clothing / Accessories	Profile photo Avatars
Affect	Medication Attitude	Status message Reactions
Availability	Presence / Absence Other people	Calendar Out of office

I recognise the opportunities that changes in technology, and changing attitudes to how technology is used the workplace, has substantially improved my ability to lead the life and career I want. That it allows me to be effective at work and to not miss opportunities for advancement. From the first time I was able to work from home using an RSA token, to the day recently when I could join a meeting using an avatar, technology continues to support inclusion, diversity and accessibility in a way that is essential for people who experience disability, but beneficial to everyone.

The critical challenge is acceptance of these as options. Even today there are employers who will not allow someone to work from home, even though there is no reason why their role can’t be effectively performed from a home environment. And now, as the metaverse and avatars begin to appear in common workplace tools, workplaces put up barriers because they fear the worst and do not consider the benefits.

Due to the work that I do, my experience, and interests, I understand more than most the challenges that organisations face with respect to technology, legislation, inclusion and diversity, managing performance, culture, reputation, cost, risk and no doubt more I will remember later. Creating an equitable working environment isn’t always easy, but I hope that if you made it this far in my essay that you can agree it is not only a worthwhile goal, but one worthy of active pursuit.

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Let me know your thoughts in the comments below. Whether you read the lot, or skimmed it, I’m interested in your perspective.