Months of isolation and the stress of working through a global pandemic have tested many peoples’ mental health. But what has it been like for those who were already struggling? 

We’re all in the same storm, but we’re sitting in different boats. Peer support worker Tanya Blazewicz came across this quote recently, and she thinks it’s an apt way to think about the COVID-19 experience of neurodiverse people and those living with mental health challenges.

The rest of us might be feeling more anxious or low compared to what we’re used to – and this is absolutely worth society’s time and resources – but we should remember that isolation, social distancing and obsessive hygiene practices were part and parcel of some people’s lives long before the recent pandemic hit.

Blazewicz has been following the current recommended personal hygiene directives, such as the use of sanitisers and rigorous handwashing, for most of her life. She has been living with obsessive compulsive disorder (OCD) since she was young. The OCD part of her brain doesn’t cope well with uncertainty, she says. And uncertainty is everywhere this year.

In the early days of the pandemic, Blazewicz had a notebook she’d update every day with the number of active cases and deaths in Australia, the US and Italy.

“It sounds a bit morbid, but my justification was that when I have children one day, I could show them what it was like. It wasn’t a very good justification because there’ll be so much on the internet. But I haven’t written in it for a while, which is a good sign.”

When HRM first spoke to Blazewicz last year for a different story, she described her experience of OCD as being like an iceberg. Her compulsions are the tip, and under the surface are the distress and anxiety that often precede those compulsions. This time, when asked if COVID-19 had made her compulsions more obvious and visible, she said, “Not at all.” 

“A lot of the things I usually do now appear quite normal. Everyone around me has been washing their hands more and obsessively Googling the virus. It was underneath the tip of the iceberg where I felt I was different to other people. 

“What I’ve found hard, when at work or out in public, is managing my thoughts. I’ve told myself I have to remember everything anyone touches. I am expending so much mental energy thinking, ‘They just touched that. I shouldn’t touch it too. Did I just touch my face? Should I do more hand sanitiser?’ And while I’m having all those thoughts, I also have to try and pay attention to the conversation I’m having. My brain has felt very full.”

People with pre-existing mental health challenges are prone to relapses during a pandemic, according to Dr Debanjan Banerjee, a psychiatry senior resident at the National Institute of Mental Health and Neuro-Sciences in Bangalore, India.

In a recent research paper, Banerjee looked back at the SARS and MERS outbreaks, and found the exacerbation of OCD was well documented six to 12 months after each crisis had ended. 

This supports predictions that the mental health impacts of COVID-19 will have a long tail.

“I just wouldn’t open doors I’d hang around and wait for someone else to go through, and I’d sneak in behind them.” – Tanya Blazewicz

Banerjee says increases in mental health cases can go unnoticed in a crisis, as national priorities are skewed towards different public health priorities and there are disruptions to normal medical services.

“Many patients with OCD might [be] hesitant to seek help either due to stigma or lack of understanding related to what is ‘excess’ behaviour in terms of washing and bathing,” he writes. “However, with an increasing number of countries affected… managing mental disorders has been emerging as a necessity to stabilise the quality of lives.”

Reasonable behaviour

Blazewicz relates to the confusion of differentiating between compulsions and what constitutes reasonable behaviour when a highly contagious virus is spreading. In the early days, she was too frightened to touch any door handles. She’d read that the virus lingered for longer on metal and this triggered her anxieties.

“I just wouldn’t open doors I’d hang around and wait for someone else to go through, and I’d sneak in behind them.”

Blazewicz’s manager, who had always been a support to her in the workplace, delivered some tough love by making a point of saying, “I’m not opening any doors for you. I’m not enabling you.”

“It was harsh, but it made me check how rational I was being, which was hard because everything seemed sort of rational. When my OCD is about something that’s very different from other peoples’ experiences, it’s easy to tell when I’m having an intrusive thought. When it’s about a virus that’s all over the news and social media, it’s much harder.”

On the other hand, there was a positive side to having the rest of the world care more about hygiene.

“There’ve been times in my life where I’ve washed my hands until they were red raw but for once I feel like I’m not alone in feeling uncertain. Everything that has been going on is universal; there’s a good sense of community.”

But for those with pre-existing issues, this sense of community has its limits.

We’re (not) all in this together

Alice (not her real name) is one of the one in 70 Australians living with autism. Even before the pandemic began she had been experiencing a tough time. A series of events in her personal life had made her feel like she was treading water, and COVID-19 made managing her mental health that much more difficult. She started feeling depressed.

“The first six weeks were really hard. I was feeling really tired. I got random bursts of energy, but I couldn’t keep it up.”

She found the first few weeks of working from home to be a challenging adjustment.

“I’ve found myself working well into the night and not realising I haven’t eaten dinner or taken a break,” she says. “There are days where I don’t even open the curtains. It’s not good. Whereas when you’re in the office, you either go and have lunch with someone or you’re prompted to take a break when you see other people doing it.

“It’s the blurring together of your worlds that makes it hard. I’m not as good as I usually am at saying, ‘That’s enough. Go and take a break.’”

Alice has been troubled by pandemic rhetoric that suggests we’re all going through the same thing. Referring back to Blazewicz’s quote about being in separate boats, Alice feels it’s important we remember many people climbed into their boats long before COVID-19 was around.

The notion that we’re all in this together may be well-intentioned, but it can be quite dismissive, she says. She thinks people say this as a way to reassure themselves, rather than reassure the person they’re saying it to.

“I wish people could just understand that not everyone was perfect before this pandemic. I wish people could separate the pandemic from individuals’ needs. I don’t understand why empathy is conditional upon it being related to the big thing we’re all worried about.

“The things that have been causing my slump since December were still there. Going into a pandemic meant I felt like I couldn’t talk about it because people are dying or are being made redundant.”

“It’s not like I can say, ‘Sorry, depression, there’s a pandemic on. Can you come back?’”

Alice began to retreat. When her usual support network at work would message her online to check in, she was more inclined to say, “I’m doing great!” than to tell the truth. 

Thankfully, with some encouragement from her out-of-work support network, she has since reached out to some colleagues and has been honest about how she has really been. As a result, she has been feeling better.

Crisis drives progress

If crises have a silver lining, it’s that mental health structures are usually improved in their wake. In 2013, Typhoon Haiyan hit the Philippines, destroying 1.1 million homes and killing more than 6,000 people. There were only two facilities providing basic mental health services before the disaster. In the aftermath, with the support of the government, World Health Organisation and other partners, all of the health facilities in the affected region were equipped with mental health services. 

But that’s the aftermath. In the rolling crisis that is this pandemic, implementing mental health support has been sporadic. 

Thankfully, when prompted, many organisations have reacted well. When COVID-19 first hit, Alice’s workplace was all systems go regarding the practical side of remote work – creating guides for using Microsoft Teams, arrangements for working from home, etc – but there wasn’t a lot of talk about mental health.

“A colleague and I went to [management] and said, ‘This is great. These are going to really help us. But can we please start to talk about mental health?’ They were very receptive to that feedback.

“It’s a firm of really good people. Only an hour ago, they sent out a wellbeing survey to get an understanding of how we’re all tracking, and asked questions like, ‘Do you feel you could speak openly? Do you feel like you’re being supported?’ They’re listening to us and are always willing to improve, which is really positive.”

The pandemic appears to have made many employers more transparent. They’re sharing with staff information they wouldn’t have in the past. Such efforts are important, but if individual differences aren’t taken into account, they can backfire.

“‘Sorry, depression, there’s a pandemic on. Can you come back?’” – Alice

There was a period of time when Blazewicz was getting daily COVID-19 update emails from her employer. For someone who was already taking detailed, daily notes about the virus, this wasn’t helpful.

“I ended up deleting them as they came into my inbox. I appreciated that they were being transparent,” says Blazewicz. “But I also appreciated that I had the choice to delete them because I was reading so much about the virus already.”

While she can’t speak on behalf of anyone else with OCD, Blazewicz wants her neurotypical colleagues to speak more openly about their difficulties. The sense of community she detected in everyone caring more about personal hygiene wasn’t always reflected in how people spoke.

“There were often times where I felt quite isolated. Like I was the only one having a hard time. When I looked online, I could see the whole world was panicking. But people weren’t talking about it around me. I really wanted to hear that I wasn’t alone.”

For every large-scale support mechanism employers can put in place for a remote workforce, such as purchasing new equipment or investing in an EAP, there’s likely also something small they can do to make an individual’s experience better. That could be taking the time to truly understand the specific triggers for an employee living with OCD, or developing communication frameworks with autistic staff in mind.

Primed to cope

While neurodiverse employees and those living with mental health issues have found navigating this crisis difficult, there are ways in which their differences have been advantageous. Alice was able to find some humour in her colleagues’ responses to their workplace’s new approach to communication.

“One of the how-to guides included information about video conferences. And some people saying, ‘Oh my gosh. We have to communicate without social cues now.’ I was like, ‘Oh, really? I do that every day.’” 

While Blazewicz says her OCD “reared its head” in the early days of the pandemic, she’s also uniquely prepared to cope with it.

“Having been through this all before, I did fall back into the pattern of skills I’d learned before, such as self-care strategies. 

This is true of a lot of people who are cognitively diverse or live with a mental health issue. They have pre-existing strategies and capabilities that really help in difficult times, says Blazewicz. 

“A lot of those people are actually coping quite well in the pandemic and could perhaps teach other people who are feeling anxious or depressed for the first time.”

Thinking about returning to ‘normal’ work life, Blazewicz says she wants “choice and control”.

“If I’m not comfortable to go fully back to the office or catching public transport, I want to choose to stay at home or have them help me in paying for parking. I want to be able to do things at my own pace.”

Beyond the pandemic, what gives Blazewicz peace of mind is knowing her employer now has the infrastructure in place to support online working. If she is having mental health issues in the future, she’ll be able to work from home, and they will trust she’ll do so effectively.

Alice has noticed the way COVID-19 has transformed views on mental health for the better, but is worried it might revert after the crisis is over.

“We can only hope that the bonding experiences we’ve had during this pandemic will change the way we view and practice empathy.”

This article was originally published in the July 2020 edition of HRM magazine.

Looking after peoples’ mental health in the workplace is of utmost importance. AHRI’s short course is designed to help participants with stress management and more, and provides helpful mental health awareness resources.