”Instead of spreading hate towards people with COVID-19, we need to try and bring as much empathy to that conversation as we possibly can.”

The bullying started after Jenene posted about contracting the virus on Instagram. Although she’d been warned not to share her diagnosis in case she was bullied, she decided to speak up to end the stigma around it for others.

Without her knowledge, the media quickly broadcast her story.

“My first experience of other people knowing about my diagnosis – other than on my social media feed – was when The Herald put me as a breaking news story.

“I think I was the only case at that time that had a name to it – the country was desperate to have names and faces tacked to this thing happening. So that was a bit mind-bending, finding yourself a well-known COVID-19 patient in New Zealand.”

Jenene says the reactions to her diagnosis at the time and since have been “mostly really good” – but some have been shocking.

“When people are scared, people are very mean.”

She was trolled – sometimes by conspiracy theorists, but also by people she knew offline. Being bullied by an acquaintance stood out the most.

“She was one of those Facebook friends you collect over the years. She left a comment on my Instagram which was just horrific, it was so awful, it was along the lines of “you lazy person, get out of bed, you’re fear-mongering, you’re spreading lies,” and it went on.

“I was so blown away by her that I deleted her comment, blocked her and sent her an email empathising with her and saying, “I’m just really concerned about where things are at”.

“She just layered it on, [her reply email] was about two pages long, and it went on and on about how I was pathetic, and a terrible excuse for a human being.”

At the time, Jenene was living with chronic fatigue syndrome brought on by COVID-19 and could only muster two hours of energy a day. The trolling affected her mental health and overlaid her experiences with a heavy cloak of shame.

“I felt shame. Shame is such a horrible, horrible emotion and I think definitely the one that really trips people up at a mental health level. Once you descend into shame, it’s very hard to pull yourself back up out of it. 

“When you contract COVID-19, keeping your mental health in peak physical condition is the only way you’re going to be able to get through an incredibly long journey to wellness. If you descend into depression and anxiety through that, it’s just going to be longer, harder and more painful.”

Jenene’s experiences with bullying have only made her a stronger advocate against it. Despite her health challenges, she has often spoken up for people with COVID-19 in the media and now sits on a board of independent researchers educating people on what it’s like to have the virus.

Joining national and international COVID-19 support groups, having “guardian angels” on Twitter who challenge her trolls and spending time offline have also been really helpful for her.

Jenene wants people to channel empathy towards people with COVID-19 by imagining what it would be like to contract it.

“It’s an incredibly frightening, terrifying set of words to have delivered to you.

“It’s steeped in so much fear, and so when you hear those words [you have COVID-19] it’s hard not to feel pulled into a place where you feel incredibly scared for everything. So we really, really need human beings to be nice!”

She also urges people to consider how much they are engaging with hate speech online, and how they could counteract bullying comments with empathy themselves.

“What online content are you engaging in, how are you behaving within that, and how much fear and hate are you putting into how you’re engaging?

“Always take a moment to consider how you’d like to be treated, and think about the implications for the person on the other side. That’s what New Zealanders do, and that’s how we are different. Let’s not squander that.”