For Briar Edmonds, who lives with a long-term health condition, that kind of constant vigilance is commonplace.
Back in early March, when it became clear Covid-19 really was going to become a global issue, Briar says it was “really scary” watching the pandemic develop. As an immune-compromised person, living with two auto-immune diseases, she knew she was at a far greater risk of being badly affected by the disease if she caught it.
“The medication I have to take is an immune suppressant, because my immune system goes crazy and tries to attack me,” she says. “When it all started happening, it made me quite frightened.”
Two weeks before New Zealand moved into noho rāhui / lockdown, Briar had already put herself into isolation and only started coming out of it once we moved to level one. She says there has been a greater awareness amongst Kiwis about how volatile viruses can be, which she’s grateful to see, but thinks more work needs to be done on understanding how our individual actions can affect other people.
“It’s frustrating when people say – in terms of immune-compromised people – ‘oh well, that’s not me, so I don’t need to worry. I don’t need to stay home when I’m sick.’ It can make me quite angry,” she says. “There’s a common misconception that immune-compromised people are just the elderly. It can be anyone – it can even be kids.”
Briar put her own experience to wider use by being part of the government’s Unite Against Covid-19 response team, working in the social media division. “I felt like I was helping other New Zealanders with their mental health – there were a lot of people who were very stressed, and I was able to help them, point them in the right direction. That made me feel better.”
The journey to diagnosis can be a long one for people who live with an autoimmune condition. Already living with coeliac disease, a severe intestinal condition, Briar developed new serious symptoms in 2018 that made her realise something else might be at play.
“I had lots of joint pain and my hands would lock up in the morning, and I couldn’t unlock them for an hour or two,” she says. She went to her doctor, who sent her to a specialist, and then another one, and then another one. Eventually, she was sent to a rheumatologist, where Briar was diagnosed with rheumatoid arthritis, a condition which causes inflammation and painful stiffness of the joints.
“It took three or four months to get diagnosed properly,” she says. “It was definitely a big change. I quickly discovered that stress has a big impact, so I had to make changes in my daily life to cope with that – reduce my work hours for a while and take some time off.”
In her mid-30s, it was not an easy job to suddenly scale down so many aspects of her life, Briar says. “Getting a lot of sleep, taking care of yourself and saying no to things are all quite hard when you’re a people-pleaser and you’re so used to just saying yes.”
Making rest a priority is one of Briar’s most important tools in looking after herself, she says.
“It’s hard in your 30s, you still feel like you have to be achieving things all the time, so it’s about telling yourself that it’s okay to take a break, to not buy too much into the ‘hustle’ culture. Trying to do a bit of exercise – it’s hard when you have a joint condition, but gentle stretching and yoga is good. And keeping in touch with family and friends. I’m quite introverted, so I find it very easy to go inside myself but it’s important to talk to loved ones about how you’re feeling.”
For those who are going through the diagnosis journey, Briar says it’s crucial to remember things do improve with time
“For my particular condition, the first year is the hardest – it’s a hard process to find out the right cocktail of medication, you have to change your whole life around, find out what works for you. Everything will change – but it will get better. There are a lot of people going through similar things, so you don’t ever have to feel alone.”
If you’re living with a long term health condition or know someone who is managing one, you can find more advice here: https://depression.org.nz/covid-19/long-term-health-conditions/