Friday, December 2, 2022

“I Tested Positive for Covid-19 in March… And I’m Still Struggling” How Are You Today, Freya Sawbridge?

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At the start of this year 26-year-old Freya Sawbridge was enjoying that good old Kiwi right of passage, the big O.E. in Europe, when her plans – like all Kiwis’ – were completely tipped on their head. As Covid-19 began to sweep the globe, Freya made the decision to come home to New Zealand. Except she had a rude awakening soon after arrival – the immediate symptoms of Covid-19. Now, some six months later, we check in on Freya who has a stark warning about the virus – particularly for those who are currently brushing it off as something that only affects the old or already immune-compromised.

Hi Freya, how are you today?

I’m okay! I’m currently in Waihi with my dad and I’m in the library doing a little work. I started a new anti-inflammatory diet a couple of weeks ago and I think it’s helping me.

Now, you tested positive for Covid-19 back in March – can you tell us a little bit, briefly, about the lead-up to your diagnosis: the life you were living overseas and why you moved home, how you think you may have contracted the virus and when you tested positive?

I had just moved from the Netherlands to Scotland when coronavirus hit the UK. I was low on money and I couldn’t afford to pay rent without a stable job and so I decided to go back to New Zealand (I had to return back at the end of the year anyway to sit the bar to qualify as a lawyer, so this pandemic just pushed everything forward).

I have absolutely no idea how I contracted the virus. If it wasn’t for my flat mate in Edinburgh also getting sick then I’d have thought I caught it on the plane. I developed symptoms the first night I landed back in New Zealand and I tested positive two days later.

It must have been incredibly frightening to have tested positive. What was that time like, and what support did you have available?

I was strangely calm for an hour or so and then anxiety kicked in. My chest began tightening and I made my dad call the ambulance. They came and reassured me that they thought I didn’t need to be put on a ventilator and whilst that was nice, I just knew they had no clue what was going on.

It’s incredibly difficult to have an illness no one knows anything about and essentially nothing can be done for. You don’t have any support in that sense. You just have to hope you survive. 

Obviously, you caught this back in a time when you could quarantine at home, instead of the mandatory hotel stay when you land at the airport – but what did that mean for you? The fear of making a mistake and accidentally passing it onto a family member must have been huge!

Absolutely. I was so happy to be able to see and talk to my family from a distance but my greatest fear was always passing it on to them. I just took every single precaution I could such as washing my dishes in a bucket (twice) before handing it over to them to go in the dishwasher and showering in a bucket on my basement patio instead of entering the main household to use the bathroom.

The room where Freya quarantined for 29 days – including the blue bucket in the patio where she had her showers

After suffering a relapse, you ended up being quarantined on your own for 29 days all up. Did you just approach things one day at a time? Did you put any structure into your days?

Covid sickness is notorious for its rapid symptom change. I’d wake up with a sore throat which would fade after an hour but be replaced with intense nausea. Then I’d get dizziness for three hours which would then stop and I’d be seemingly okay for an hour before another symptom would kick off. This makes it far too hard to put any structure into your day. I couldn’t even take it day by day, I had to take it hour by hour. Luckily, I never actually got bored (thank you TikTok and Vampire Diaries).

You’re now what we call a “Covid Long-hauler” in that you are continuing to experience symptoms and relapses, all these months later. How often are you relapsing, and what symptoms do you experience?

Since March I have relapsed six times. I have low-lying symptoms 24/7 but a relapse just exacerbates them. I will get diahorrea, chest pain, back pain (from the lungs), muscle spasms, body numbing, tingles, intense dizziness, headaches, heart palpitations, temperature and a lot of brain pain (very distinct from a headache, it feels like my brain is swelling and pulsating).

It’s triggered by post-exertional malaise which means if I strain my body too much physically or mentally I will crash. The theory this far is that Covid-19 hijacks the Automatic Nervous System so our bodies cannot function properly which leads of an onslaught of symptoms if we overdo it.

It must be incredibly frustrating that your path to wellness is not linear. That must also be taxing on your mental health. I’m wondering how you deal with the bad days and what has this experience taught you about yourself?

The fact Covid-19 is so up and down creates a hideous game of mental snakes and ladders. I’m generally a very contented person but I’ve reached some very dark places these last six months. In the depths of the illness you just think “if this is me for the rest of my life then I don’t want it”. Then my nephew visits or I laugh with a friend or my writing gets published and the sun shines a little again.

I’m sure the experience has taught me a lot but right now that’s hard to see because it’s hard to gain perspective when you’re still in the fog. What I will say though is that getting sick has affirmed to me the life choices I made before I got sick (living in as many different countries as possible and not staying put for a job).

My sense of peace in my darkest times came from knowing I’d lived how I wanted to my first 26 years. Life can change in an instant and I think we should all do the things that burn most deeply inside us before the chance gets taken away.

Freya’s view: Socially distanced catch-ups with her family.

You’re certainly far from being alone in your struggles with this illness. An Italian study has found that 87% of hospitalised Covid-19 patients still had symptoms after two months, while a German study among those who recovered at home, found 78% had symptoms three months later. Despite all this research and information, do you find that people are surprised to hear you’re still unwell?

Definitely. My friends overseas are more clued up because there were far more cases in Europe and the governments are starting to talk about Covid Long-Haulers. So many people in New Zealand seem to think we have the virus licked and the government only ever use death as a reference point for the severity of the pandemic. Covid Long-Haulers is still not common knowledge and it is a huge health crisis.

Unfortunately, I’ve read interviews with other Covid Long Haulers who’ve experienced skepticism, sometimes from medical professionals who should know better, and even – unfathomably – online abuse. It seems utterly insane to me that it’s possible to become the target of hate for suffering from Covid-19. Have you had to endure anything like that?

I’ve definitely had some online abuse and my fair share of people telling me I brought this on myself (by not drinking enough herbal teas or not having a strong enough immune system). But as long as my family and closest friends understand me then the hate is just background noise.

Aside from the hate you definitely also get people who are just downright confused by Covid Long-Haulers. I don’t blame them though because before I developed this sickness I was exceptionally ignorant towards chronic illness. I was healthy and I could live my life the way I wanted so I just never considered the fact other people have hidden physical limitations that make their living far harder. The thing I don’t like is when people think we are making it up. If we wanted attention, why on earth would we choose to get it for a chronic illness? There are far more glamorous avenues to be noticed.

What I also will never accept is when the medical profession isn’t informed. My cardiologist had never heard of long-haulers and the Nurse who took my ECG told me more people die from the flu (this is factually incorrect). The Emergency Doctor at Auckland Hospital told me “if you can walk in here, you are fine. If I do tests on you I can 100 percent guarantee nothing will be found”. I don’t expect doctors to understand a novel virus but I will never accept arrogance in which so many of us long-haulers have been dismissed. You cannot tell a patient who is suffering that they are fine when they are not.

The Atlantic ran a piece about it, describing it as “medical gaslighting, whereby physiological suffering is downplayed as a psychological problem such as stress or anxiety” and discovered that it was most often women with long-haul Covid symptoms who weren’t taken seriously. I heard that you were one of 60 long-haulers who spoke to the World Health Organisation, asking for recognition and research. What did you put forward to them and what is your hope for what can be changed here and aboard?

It was spearheaded by the wonderful Long Covid SOS group in Britain and I was kindly invited to join to represent New Zealand. We asked for three things – Recognition, Research and Rehabilitation. Death is not the only thing that matters in a pandemic and we must also count lives changed. This can only be done by spreading awareness and studying Covid long-haulers. Hopefully then we can find some answers and cures. It was great we were able to get a meeting with WHO and that they took us seriously. It’s a huge step in the right direction but we need governments to step up and formally recognise and track us.

In healthier times: Freya exploring the great outdoors

Finally, what do you have to say to those Kiwis who might have that attitude of ‘Covid really only affects old people – I’m young, surely I’ll be fine”?

I’d say look at the statistics. Between 10 and 25% of all symptomatic cases will become long-haulers and the average age for long-haulers is 44. Whilst it’s true that young people are less likely to die from Covid it’s an absolute myth that young people do not have serious consequences. This virus is not just a respiratory virus, it ravages every organ and causes a whole range of serious issues in young people such as glaucoma, brain damage, diabetes, kidney failure, bladder problems and lung scarring.

What’s more is that studies are now showing the virus causes damage in even ‘very mild’ or asymptomatic cases. One study showed 15 percent of all college athletes with mild or asymptomatic covid-19 had findings consistent with myocarditis (inflammation of the heart).

I have friends that caught covid-19 and felt absolutely fine after 2 weeks but there’s no guarantee of this. Just like me, you could become a Long Hauler. Youth and good health offer no ultimate protection from this virus.  

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