Living as ‘High-Risk’ in a Pandemic

BRICKS speaks to six 'high-risk' people from self-isolation on what their experiences have been like during the coronavirus pandemic.

As we remain cooped up in our own homes for another week in self-isolation, one small solace we have found is the shared emotion that we’re all in this together. As we’ve been advised by the WHO, communities are only protected if everyone participates in social distancing and hygiene guidelines. So as long as we all practice these easy steps we can slow the spread and put less stress on healthcare services. Then we’ll all be fine, right?

But there are some people whose health is more complicated, and who have more than working from home and hand-washing on their mind. The elusive group of those ‘high-risk’ due to age, preexisting health condition or disability cannot rely on their own individual actions – their health and wellbeing depend on the actions of the larger population respecting guidelines.

Their inevitable anxiety was then undoubtedly perpetuated as government statements, online headlines and thousands of tweets began asserting that coronavirus’ lethality was only limited to those ‘high-risk’, a welcome relief to all those able-bodied. The lack of concern for those with illnesses – as if their mortality should not be of concern as it is already compromised – was blatant and ignorant.

Trying to identify those ‘high-risk’ as one singular label doesn’t help reduce the spread of misinformation around this group – the label includes those with more common conditions such as asthma and diabetes to more complicated illnesses such as heart failure, sickle cell disease, HIV/AIDS, anyone with a weakened immune system and those receiving chemotherapy along with those overweight, physically disabled and anyone over the age of 70. And the ways that those at a higher risk are affected by the pandemic and subsequent quarantine is equally as varied, but can include problems receiving important medication and access to food.

In light of this ambiguity, BRICKS speaks to six ‘high-risk’ people during self-isolation about their experiences in isolation thus far, what able-bodied people don’t know and how we all can help those most in need of support during these uncertain times.

Stefani Nurding

I got the heads up from my mum about coronavirus very early on and decided to start isolation about two weeks before it was officially announced here in the UK. A lot of my family suffer from chronic asthma so we have been taking coronavirus seriously from the start. That in itself was a challenge because I look very healthy and was having to justify my choice over and over to friends who just said I was overreacting, to the point where I just had to switch off my phone for a bit. Luckily my son’s dad was understanding and so there wasn’t any conflict there which I was also anxious about.

My head was going around and around because I have a one-year-old, imagining I would get the virus and not be able to look after him, questioning who would take care of him and how I would get him to his dad who is an hour away, or worse if he would get it or if his dad would get it and maybe that was the last time we would see him for a while.  I had really bad anxiety about this, not sleeping, staying up looking at articles on my phone. Every time I had settled my mind about it the next alarming bit of news would pop up, the latest being the apparently healthy youngsters passing.

My whole family live in Devon so I am pretty isolated already except for Felix dad and his parents. I had done what I would call a reasonably big shop but it was only a large bag which I could carry with the pram so not really that much, I had to do this a few more times simply because stuff like nappies were selling out really fast and are a large item to carry.  I wasn’t able to get a mask as they were sold out so I just put the plastic cover on the pram.

I placed an order online for Asda which I tried to put through a lot of times but it just kept saying it had gone through and then not showing. I couldn’t believe all the online shopping sites where crashing and selling out.

New things seem like a big risk like going to our communal bin area which to me seems like a likely place to catch it. In general, my anxiety level is high. I had confirmation from a new company I would be working with on some skate related stuff that they were going to carry on working with me, I called my mum and best friend as this was such a huge sigh of relief, only to be told 2 days later they had changed their mind. I have been staying in and trying to stay positive and create some content for IGTV to take my mind off things. I love to exercise but most days I see it as too much of a risk to go out. The one saving grace is that I am very grateful to get to spend so much time with the baby and will hopefully look back on this time and be grateful for that.

Patrycja Zaraś

I take immunosuppressants and medication for lupus which is currently in a global shortage as it is being used as a potential treatment for coronavirus. I have been ill for 7 years now. Over the span of those years, I have developed two new conditions but as long as I was able to live independently, I haven’t considered myself to be a disabled person. 

Of course, having long-term illnesses there’s been times when I would go to hospital and have had to stay there for a month or two. I guess when you get used to this life, you don’t see abnormality in it.

Like anyone with an illness, I have often heard that I can do anything if I want to, that nothing can stop me, but the coronavirus outbreak has made me realise that this is not true for me. 

Suddenly you understand that you’re not like others, because they (most likely) will okay, but your entire life can end overnight. It’s no longer just up to me taking regular medication and staying away from alcohol – everyone and everything can be lethal to me. Seeing my partner, friends, going to the shop, walk, picking up my medication or even receiving a parcel. 

I realised that I’m dependant on so many things and if just one of them fails, everything will fall apart.

Patrycja Zaraś

I realised that I’m dependant on so many things and if just one of them fails, everything will fall apart. All of my hospital appointments have been either cancelled or changed to on the phone. This will enable me to get prescriptions, but the only way to control illnesses like mine is to monitor it through blood tests and routine procedures. The medication which enables me to walk and function normally is now in short supply since its potential in treating COVID-19 was reported. 

The outbreak has made me feel small and weak. As numbers are growing, my hope is shrinking. I’ve lost all motivation to finish my coursework – what’s the point when no-one knows how long this will continue and if I will be able to get the medication and medical assistance that I need to live? Even with lifted social restrictions, vulnerable people won’t be able to go out as the risk will still be there. Only a vaccine (which takes up to 18 months to be put into use) is going to be a real chance for people like me to live normally. Who will pay my rent in the meantime?

It hurts to see people posting about their plans when it’s all over. I stopped making plans, because I don’t have much hope. I’m forced to live on the courtesy and kindness of others, my boyfriend does my shopping since it’s impossible to find a slot at online supermarkets. But what about those who are not privileged enough to have someone else’s support?

I really want people to understand that it is not just coronavirus which will kill, it’s also the lack of access to doctors and medication. So please put yourself in someone else’s shoes before making a decision to leave your house for an unnecessary trip.

Ameera Mian

In this time of panic, my house feels like a beacon of normality. Isolation has been our normal before and it is again. Last year I underwent treatment for cancer, where my immune system became almost non-existent. It meant that the quietest cough, sneeze or sniff made me run for the hills (really slowly with no stamina because – damn – chemotherapy is tiring). I had to practice social distancing before they came up with the mainstream yogi-like word for it, the only differences being that I was not allowed to go for walks but I was allowed visitors if they had not been near any sick people. So as someone who has done this before, here are some tips for you first-timers:

1. New Normal This is your new normal for a little while. Practice social distancing and accept this as a temporary change. Please stay home for us immuno-compromised.

2. Schedule I’m looking at my calendar on the wall right now that I scribbled it out last night, trying to pick a day to write this article. I planned the next two weeks and then tick off the things I did. It is kind of like being back at school where you get a sticker every time you make art, take a walk or play guitar. Actually go get yourself some stickers. You deserve a Sailor Moon thumbs up.

3. Journal Whilst we are on the topic of embracing your 14 year old self, start a diary. When things get a bit overwhelming, I tend to write them down. Just getting them out lightens their weight.

4. Recipe Swap Since you can’t pop by the ramen place on the corner, now is the perfect time to try making those gyoza dumplings. Plus burning them and having to start all over really fills up extra time in your day (speaking from experience). My friends and I have been sending each other our recipes, fit with the genius adjustments we made because there weren’t any chickpeas left in the shops.

5. Home Workouts Before cancer I would scroll past videos of people in their second hour of an ab workout with an intense eye roll. I exercised but it would not be for a beach body. After chemotherapy, it’s a long uphill battle getting any strength back. So I started finding a lot of solace being able to do home workouts in my room. Granted, I did Jane Fonda them up. I bought rainbow coloured weights, neon leg warmers and a velvet leotard. The best part though is that you can hit pause whenever you want without any judgement.

6. Obsession Researching something and getting full-blown Mariah Carey obsessed is a great distraction. There’s no gossip to be had these days so take all that pent up Instagram stalking ability, and direct it at something you love. I always loved surfing but living in London, I had never been very good at it. Surf competition videos played over and over next to my hospital bed. Now I have a fantasy surf team and a lot of theoretical skill that might come in handy?

7. Bucket List You don’t need to write a list of things that you want to do before you die. But how about a list of things you want to experience over the next year. On mine is being able to do a backflip and seeing the sunflower fields in Amsterdam.

8. The Internet When you’re on a video chat with five friends all talking over each other are you ever truly alone? Tinder’s passport is free and extremely underrated. You can set your location to anywhere in the world and set up some long term plans. Your Ibiza trip in May is on the back burner but getting shown around Sydney by locals in September might make up for it.

9. Well Done Another patient once told me that he always made his bed in the morning and then congratulated himself for doing it. On days that feel heavy, congratulate yourself on the small things. They are big things.

10. Chill Lastly, let yourself be lazy. Eat cake. Complete Netflix.

Mélanie Delaroche Curtil

What people might have already forgotten is that there were a few days before the lockdown, when coronavirus and what it could do to the UK was already setting a sense of fear among us. These few days, less than a week, were crucial to high-risk people like me. 

Before the self isolations and quarantines, the closed businesses, the live-streamed death count, there were a few days when I was alert, on the look-out, like the species ranking low on the food chain at night. The media kept repeating that the virus would affect this almost mythical community, newly found, rarely spoken-of group. The ‘High-Risk People’ who influencers, journalists, and politicians kept talking about, we’re advocating for our safety like never before, really. Like nameless, faceless people, I was in danger of getting this and dying because of it, more than anyone else. So I started realising that this could be what my secret nightmares, post-apocalyptic daydreaming had been for months. 

I was alert, on the look-out, like the species ranking low on the food chain at night.

Mélanie Delarouche Curtil

A year ago, when becoming more and more aware of the environmental crisis, it became clear to me that if we were, when we would, get to a situation – whether it’d be big pharma company closing down and stopping production, governments shutting down, law of the fittest, mass rush to the supermarkets, battle for goods – I wouldn’t stand a chance. I – now called high-risk – depend on man-made, corporations-owned resources; my treatment. I depend on the production, delivery, access, affordability of something that in no way is in my power. That is completely out of my hands, external to my will and self, no matter how privileged. I found myself in a very difficult situation, where I would now more than ever rely on people to get me somehow, anyhow, what I need to survive: my medication.

At first, high-risk didn’t even imply getting the virus, getting incredibly sick, and possibly dying because of my auto-immune disease. It’s not what scared me and made me look at people around like possible threats. High-risk in these first few days – prior to isolation and the lockdown of entire countries – meant relying on a very intricate system which I knew would not hold up. High-risk meant, if the NHS goes down, I’ll go down with it regardless of getting infected. And so this is what happened in my mind two weeks ago when I walked into my local Tesco and found empty shelves, visited the fruit and veg corner store and was told they might not get deliveries from Europe, went passed the raided Boots with a line of nervous people waiting for their prescription. I realised this is what I had been dreading and I didn’t want to rely on a struggling NHS, overwhelmed Boots employees, or International Trade and lawmakers dealing with import or export that I will never get to meet nor see. 

So I got to my family, where I knew safe and easy access to my treatment was possible and where loved ones would be able to protect me if the situation deteriorated in any way. In this time, what is reminded to me is how uncertain my livelihood, health, and survival really is in times of crisis. No matter how independent, strong, and proud I get, there’s a truth lurking inside my brain telling me I need others. The virus is not what scares me. What scares me is the collapse of a system that’s keeping me alive. And maybe that’s also what they meant on the news; Stay home, Protect the NHS, Save lives. 

Rebecca Jenkins

I suffer from an autoimmune disease called Crohn’s Disease and as I take immunosuppressant drugs to manage it, there is a high risk of developing complications if I were to catch coronavirus. Because of this, I’ve been advised by the government to stay at home and avoid people, including friends and family, for 12 weeks. 

Before the UK-wide lockdown was enforced, I was housebound having just been discharged from hospital following a flare up of my Crohn’s. When I have a flare up, I’m not able to go out and socialise or exercise. So, to a certain extent, this lockdown hasn’t had a huge impact on my current situation. 

However, whilst the lockdown may not have affected me physically, it has had an impact on my mental health. Mostly, it’s stripped me of the coping mechanisms that I use to ease the difficulty of being housebound due to my illness. These are small things like having a friend visit or going for a walk with my dog which give me a sense of purpose and make me feel connected to the world around me. 

Self-isolating has stripped me of the coping mechanisms that I use to ease the difficulty of being housebound due to my illness.

Rebecca Jenkins

The thought of managing my flare up without these things is daunting but the biggest source of anxiety is having difficulty accessing medical support. I’m really fortunate in that my medication is delivered to my home and I self-administer my own injections. However, if I struggle to manage a flare up, I have the safety net of being able to contact my nurse or consultant for advice. But all my upcoming appointments have been cancelled and I’ve been advised against visiting the hospital unless it’s an emergency. 

Being left to fend for myself without this support during a flare up is really unnerving. Obviously, if my health deteriorates, I’ll be able to go to hospital. But as the amount of coronavirus patients increases in the hospital, it’s ironically become dangerous for those of us with a compromised immune system.

Although managing my Crohn’s is an extra complication during this period of isolation, in many ways, my illness has mentally prepared me for being housebound through this pandemic. I’ve been forced into isolation so many times over the years, I’m used to managing the boredom and loneliness that comes from being confined between four walls. 

I appreciate that isolation is difficult for many people and I understand how privileged I am to have a safe home to live in during my isolation. We’re all waiting for this storm to pass but hopefully, when it does, everyone can reflect on their experience and take something positive from it. Personally, I hope that able-bodied people who are frustrated by their boredom gain an insight into the reality of people who are often housebound due to illness or disability. For many of us, this isolation isn’t temporary and it’s often made more difficult due to being unwell. Having experienced an element of this, hopefully, people will have more understanding of the challenges we face on a daily basis. 

Lauren Green

Isolation was a must for myself and my family before it was for everyone else. By the 16th March I wasn’t seeing friends and by the 18th we were called by the Cystic Fibrosis team and told not to leave the house. This was particularly tricky as my sisters and mum all spend their days at school – so who knows who they were coming into contact with!

The day schools were closed everything changed. My dance school closed, my family were suddenly all home all day and it has been that way ever since. Initially, I found this change very difficult. Everyone was mostly social distancing and only isolating if they had symptoms so, while all my friends were coming home from uni, I was stuck at home.

Since then it’s become easier to some extent – everyone else was having to stay home too and the whole thing felt less restrictive. However, as always, there was that little thing that pushed me over the edge. It was a call from my consultant doctor explaining that I would be in isolation for a minimum of three months. That was a bombshell. A few weeks is one thing but a few months is a whole new scale. This isn’t just me also, it is my whole household.

My dread is now heightened as I imagine the news announcing people can start getting back to normal and the possibility of having to stay in isolation while friends, I haven’t seen in months begin to meet up without me. To cope with the idea, I planned to see people at the park, do some yoga 6 feet away from each other. Then the second phone call: “Don’t leave the house. Don’t go to the shops, the park, the post office. If you are in the garden and neighbours come out – go back inside.” So that’s that plan ruined.

For more information on coronavirus, please check these resources from the NHS and the World Health Organisation. For more information on supporting those high-risk, click here.

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