Jenene 123
Jenene Crossan was one of the first people in New Zealand to be diagnosed with COVID-19, and she’s still living with the impacts of the disease every day.
“It’s been over two years and I’m not the same person I was before contracting COVID for the first time in March 2020.”
Now based in Piha with her husband, three daughters, and their many dogs, cats and sheep, the CEO and founder of Powered by Flossie has added some unexpected new roles to her CV – Jenene runs the Long Covid Aotearoa support group, working with Otago University’s Bio-Medical Research Fund for Long COVID, the Auckland University National Institute of Health and Innovation, and the Otago University Symposium Board – to name a few. “I could never have predicted this would be my area of expertise or that I would stand alongside so many incredibly experienced medical professionals to play a part in our pandemic response.”

“In some ways, being an advocate and supporter for those with Long COVID makes sense to me,” Jenene explains. “However, I believe what I have mostly called upon is my empathy — and that has been borne of personal experience.”

Jenene has had COVID-19 three times – she was our 37th COVID-19 patient, first catching it in March 2020, and most recently falling severely unwell on a business trip in France.

Her experience with Long COVID has impacted all areas of her health, flaring up her endometriosis, causing her joint pain, weight loss, severe exhaustion, mental health struggles, and something she calls “the startle” where her brain overreacts to simple triggers like people walking unexpectedly into a room.

She has really struggled with not having control over her body, and, for a long time, feeling medical professionals weren’t taking her experiences or her pain seriously. This has led her to becoming one of New Zealand’s most passionate advocates for others living with Long COVID.

Today, Jenene says she has ‘largely recovered’, although she is still learning every day how to live with the impacts of this disease.

“My energy levels, my inability to do cardio exercise, I still have inflammation issues, I get occasional brain fog, I get run down, I still have no sense of smell. But compared to this time a year ago, where I was a shell of myself, I’m a different person.”

She’s also conscious of how this has impacted her family and has struggled with letting her children see her so unwell. “I’m big on vulnerability and being open with my kids, but I felt vulnerable and that was pretty traumatising for them.”

Jenene says her “amazing” daughters have been there for her throughout, and she has been grateful for the love of her furry friends.

“My dogs helped me get through the really hard times. My pets are very cuddly and so good at giving love and comfort and operating without judgement. Just like my kids!”

The Long COVID support group has been instrumental to Jenene’s mental health. “Finding them was such a relief. When they first go into that group everyone puts up a post saying, ‘thank god you guys are here.’”

Jenene’s journey has been an exhausting one. She knows it’s not over but is quick to shift the conversation to others. “There are people whose journeys are harder than mine. Not being believed, feeling isolated, not having my life the way I was used to – for me those things didn’t come with the added stresses of financial strains, which so many others with Long COVID are dealing with. My kids are old enough to look after themselves, but there are many people living with Long COVID who have little kids to look after.

“I think most people think Long COVID won’t happen to them. But some people are feeling worse after COVID. They are dealing with fatigue, inability to exercise, random inflammation, pre-existing conditions flaring up, various mental health challenges...and it feels like no one is talking about it.”

Jenene doesn’t want to scaremonger – she knows Long COVID is relatively uncommon, and most people won’t experience it. But she is keen that those who do, know they aren’t alone and get help and support early.

“I think a lot about putting the patience into being a patient,” Jenene says. “A lot of how I interact now has changed. I’m far less ableist than before, I feel more empathetic now, I try to do everything I can to help others, and those things are so incredibly rewarding. It’s an enormous honour to be involved in the things I am since being on this journey.”
Jenene’s Top Tips:
  • Don’t be afraid to ask for help. There are support groups here and overseas. There are iwi, churches, community groups coming together to help. It is so hard to be unable to do the things you used to be able to do, you can feel isolated, lose your social networks and people can stop relating to you. Reach out and speak to people who understand.
  • Stop gaslighting yourself. It’s not in your head.
  • Listen to your body. Rest when you can. If rest is hard to get in your circumstances, then asking for help is important. You can’t do it on your own.
Supporting others living with Long COVID
  • Tell them ‘I hear you, I’m listening to you, and I’ll sit with you and do what I can to help you’
  • Being believed (or validated) is so important because someone with Long COVID is probably not believing themselves.
  • Do what you can to make them feel less alone.
  • Don’t push them. Help them find ways to relax and take things off their plate.