Blog Posts

Interview | What it means to be vulnerable in a pandemic

I know. I know. We’re all already tired of hearing the words ‘Coronavirus’, ‘Covid-19’, ‘self-isolation’ and ‘social distancing’. It’s happened in an impeccably fast time frame and, already, most of us have had enough of hearing about it (despite frantically checking the news every 30 minutes for updates – just me?). However much it hurts your social sensibilities to stay away from other humans, I’ve spoken to two at risk individuals to whom your staying inside truly matters.

Photo by cottonbro on Pexels.com

Much of the news focus has been on the elderly, who so definitely deserve our compassion in this time. For many of them, online shopping is a no-go and any visits they received to stave off loneliness have had to stop. However, there is another group that we don’t hear about so often. With many young people still defying the World Health Organisation and government’s pleas to socially distance themselves, such as the American students who have continued to gather for Spring Break, other young people’s lives depend on social distancing being taken seriously. For today’s article, I spoke to Chelsea and Daisy, both of whom have compromised immune systems, which means that the transmission of the virus to them could be deadly. Equally, it means for them that the current situations of stockpiling, lack of online delivery slots and low supply of medication are not only anxiety-inducing, but also are creating a dangerous game of life or death.

Chelsea on her 21st birthday – instagram @hughesey1c

The first person I spoke to was Chelsea, who is not only two years into a business degree but runs her own business baking cakes. When Chelsea was 16, she caught a virus. For most teenagers, this would mean a week or two off school, perhaps some vomiting and fatigue, then recovery and back to normality. However, for Chelsea, the virus continually worsened her health, leading to bleeding gums, nose bleeds, deep bruises, severe menstrual bleeding and a rash similar to meningitis all over her body. She was admitted to hospital after fainting, which caused more bruising. She was eventually diagnosed with an extremely rare blood clotting condition called Immune Thrombocytopenic Purpura or ITP. It means that within her body, her immune system attacks and destroys the blood platelets which affects the blood health and how the blood clots. A normal blood platelet level is anywhere from 150-400. At her hospital admission, Chelsea was found to have a platelet level of just 1. This put her at a high risk of a bleed on the brain with the further risk of fatality. For 6 months, she received 21 steroids a day, blood transfusions, platelet transfusions, immunoglobulin transfusions and hormone therapy to suppress her periods, as her last one had caused her to need 4 pints of blood transfusions. None of these treatments worked for her, meaning her platelet levels remain devastatingly low and her risk of dying was high. Chelsea was then given chemotherapy with an immunosuppressive drug (Rituximab for anyone familiar with the situation) for a month, causing hair loss, severe sickness and the stop of any sort of normal life, as she could no longer attend college. Fortunately, she is now 5 years in remission with her platelet levels in the low 200s with all other vitals in a stable and normal range. However, a simple cold can bring about a relapse, reducing her platelet levels yet again, let alone an aggressive virus such as Covid-19.

Daisy on a trip – instagram @holderdaisy

The second person I spoke to was Daisy Holder. She is a captioner, disability history and lifestyle blogger and a trustee for the Bristol Disability Equality forum. She crafts – mostly crocheting (she’s a hooker!) and embroiders swearwords. Daisy is also diagnosed with lupus, hEDS (like yours truly), POTS and Myasthenia Gravis (MG). Due to the lupus, Daisy takes immunosuppressive medication, as the condition is one where the body attacks its own healthy tissue, causing swelling, inflammation and damage to vital organs. Daisy describes it as ‘a whole mess of swollen joints, rashes, stomach problems, hair loss, mouth ulcers and something with [her] liver.’ The MG means that when a muscle is used frequently, it becomes very weak, which affects her breathing. Along with these, Daisy has the added complications of dislocations, heart palpitations and a ‘frankly useless digestive system’ (if you want to read more from Daisy, her blog can be found here – I would definitely recommend!). She is therefore classed as ‘vulnerable’ as lupus and the treatments for it mean that the immune system is particularly compromised. If the virus is contracted by those with lupus, the complications could also be more extreme. (source)

So why am I telling you this? Yes, these are two brilliant, creative people, but what do they have to do with coronavirus?

Photo by cottonbro on Pexels.com

Chelsea and Daisy are two examples of people to whom your self isolation and social distancing matter most. Every day, the news brings us new facts and statistics about the global effects of coronavirus. Just today, a young nurse with no previous health conditions is reported to be in intensive care due to contracting the virus in her incredible frontline efforts. Yet there are still mass gatherings occurring. Locally to me, a group congregated at a pub, despite public and council appeal not to. The plea to social distance is not a punishment. It is not an overly extreme ask – this is, to an extent, an extreme situation, which none of us have had to face before. To defy the regulations is not to fight against a fascist regime but to save your fellow human beings.

Photo by cottonbro on Pexels.com

In their interviews, I asked Chelsea and Daisy what their views on the media coverage have been so far. Chelsea describes the constant anxiety of news updates, of hearing an ever-rising death toll, whilst the politicians seem to be abandoning the masses; the public are following suit, acting selfishly through stockpiling and trying to continue their own lives because ‘it won’t hurt me’. Chelsea’s anxiety grows further at the thought of the virus being transmitted to her or to her family, many of whom have similar blood disorders. This risk is significantly increased by people insisting on continuing life ‘as normal’ whilst ironically hoarding supplies and taking the availability of online shopping away from those who truly need it.

Daisy has always had a personal interest in news and history, but she, like many of us, finds the whole coverage unusual. The constant updates, despite having very little new information to convey, is incomparable to anything else we have experienced before. As Daisy states ‘everyone is doing the same thing and having the same problems.’ The constant stream of information and misinformation has just left the public in a perpetual state of confusion. As a person living with a chronic illness, she doesn’t often experience health anxiety (due to the management of her conditions), yet like Chelsea, the feeling of being vulnerable in a situation such as this is anxiety inducing.

 It can be volatile. Next week I might be so much more vulnerable than I am now. I could have a few nights of bad sleep because of pain and after that be more likely to die from the virus than now. That’s how autoimmune disorders work, seemingly inconsequential things can change the whole course of a simple virus.

Daisy Holder
Photo by cottonbro on Pexels.com

Now that the two of them are isolating, I asked what their plans were. Daisy is lucky enough to live in a house share with a small garden, so is able to get outside for a few moments every day. She also has a great network of friends and family, along with support through WhatsApp groups, Discord servers and community Facebook groups. She’s keeping busy with a kit to build a hurdy gurdy (an EPIC plan), blog writing, researching, planning her own podcast (which would definitely be amazing), listening to other podcasts (she recommends The Adventure Zone, No Such Thing As A Fish, Answer Me This, and The Horne Section Podcast) and continuing her crafting pursuits. Chelsea is focusing on doing her university work from home via the online servers, reading and emails, as well as catching up with her Netflix shows, reading and baking some of her incredible cakes.

Photo by cottonbro on Pexels.com
I’m enjoying this photo series way too much

So what can you, an individual, do to limit the spread of the virus and keep the vulnerable groups safe?

  • WASH. YOUR. HANDS. and your clothes, body and hair once you return home. The shower is your friend.
  • When you buy groceries, if you’re able to, go to the shops. Vulnerable individuals need the online delivery/ Click and Collect slots so that they and limit their contact with the outside.
  • Stay home. If you’re home, no one can cough on you! Except you!
  • Take it seriously. This is life and death for many people.
  • When you bring groceries home, disinfect them. The virus can live on surfaces for days. Wash your fruit, spray your tins, disinfect your bags.
  • You don’t need all the toilet roll.
  • Check on your vulnerable friends and family, old and young. Call them, send a postcard, FaceTime. Go to their front windows and have a coffee date through the glass.
  • You still don’t need all the toilet roll.
  • Join community Facebook groups for your building or area if you need help or are able to provide it (such as collecting prescriptions, picking up groceries or dog walking).
  • If you show any symptoms, let your trusted people know. If it starts to get worse, call 111 or 999 if an emergency.
  • If you have any toilet roll, please send it to me, because we are down to ONE ROLL PEOPLE, ONE SINGULAR ROLL.
Photo by Vlada Karpovich on Pexels.com
Seriously, please send toilet roll.

Find me on Instagram @lcyhnnhdvs and on Facebook @lucyhannahhassahlife

Support me on Patreon at https://www.patreon.com/lhhl

Hugs x

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