I was diagnosed with a very unusual brain tumour in 2014, aged 20. Since then, I’ve had two craniotomies, intense radiotherapy, regular MRIs and check-ups and cosmetic surgery. After my first craniotomy, I learned that brain cancer is rare in people my age; it’s more common in the elderly or very young. What was more surprising was learning that people can live with tumours.
This led me to the inspiring community of people who live with invisible illnesses. A huge percentage of the population have an underlying health condition. Many of us have had a difficult time during the pandemic; once again, we are having to explain to others that, despite “not looking sick”, we are at a greater risk if we contract Covid-19.
During England’s first national lockdown, like many people with health conditions that put them at greater risk from the virus, I was told to shield for 12 weeks. I spoke about this publicly, wanting to raise awareness of people like me, who may not look like your average vulnerable person, but are just as much at risk as the elderly. Eight weeks later, my GP told me I could stop shielding; in his words, I was allowed to be a “normal person” again. Still, in the months that followed, I kept outings to a minimum, avoided shared indoor spaces and didn’t take public transport.
Yet many people with underlying conditions weren’t so lucky. Rachael, a secondary school teacher who has had to shield due to her severe asthma, tells me she thinks the decrease in movement during shielding “has made my asthma even worse”. And the psychological toll of shielding is huge: among those surveyed between May and June by the Office for National Statistics, 35% of people reported that their mental health had worsened. Five months later, we can only assume this number has grown.
In the early days of the pandemic, the original plan was for shielders to remain inside for 12 weeks from 23 March. But the rules changed, and shielders were thrown into something of a grey area. Shielding officially ended in England on 1 August, although those who are at high risk are still advised to stay home as much as possible. There have been no central government food parcels delivered to shielders this time round; instead, those who are at high risk from the virus are advised to contact their local council if they need assistance.
For many of us with long-term health conditions, particularly those who are still shielding, news of the vaccine was a light at the end of a long and lonely tunnel. We have been told that the NHS is aiming to vaccinate up to 5,000 people a day once it’s available, in GP surgeries and hospitals, town halls and even football stadiums. Adults in care homes, healthcare workers and those over 80 are, understandably, going to be first in line to receive the jab.
Preliminary guidance from the Joint Committee on Vaccination and Immunisation (JCVI) stresses that a “simple age-based programme” is the best strategy for deciding who should get the vaccine first. But there’s been little mention of people under 65 who live with underlying health conditions that put them at greater risk. After people in care homes, health and social care workers and adults over 65 years of age, “high-risk adults” under 65 – many of whom have had to hunker down and be fed through letterboxes for much of this year – will be sixth in line to receive the vaccine, according to the JCVI guidance.
For those with underlying health conditions and people who are shielding, the vaccine would make a huge difference. Before the pandemic, many of us still went into workplaces, socialised indoors and used public transport. Invisible illnesses and underlying health conditions don’t necessarily stop people from living normal lives. That’s why a vaccine priority list ordered only by age feels frustrating: regardless of age, this vaccine could give people who are classed as “high risk” – many of whom have been indoors for much of the year – the chance to get back to normality after so long.
Some shielders are frustrated that they haven’t been placed higher up the priority list. Author Rosie Fletcher was shielding with her parents, both of whom are in their 60s, but she is considerably more at risk than they are, as she takes immunosuppressants for a chronic condition. “Given how much of an ask shielding has been on us, it’s a slap in the face to then not give us priority access,” she says. “Why wouldn’t you give people who are at risk of the illness … the thing that stops them getting the illness?”
There’s a question mark hanging over the prioritisation of shielders and adults under 65 who are at high risk from underlying health conditions. If the elderly are receiving the vaccine, why not people who may be equally at risk? “A big part of the problem is they’ve not said [anything]. Those of us with underlying conditions have been left without information this whole time … we need to feel included, we shouldn’t be left wondering. It feels like we’re an afterthought,” says Jenny, a freelance graphic designer and owner of This Thing They Call Recovery, who hasn’t left her house since March. She lives with ME, short bowel syndrome, chronic internal bleeding and an iron deficiency.
The consensus among shielders and high-risk people is clear. We need greater clarity about the reasoning behind where we are on the priority list. Everyone has made huge sacrifices during this pandemic, but the burden has fallen particularly hard on those who have had to stay inside all year. It’s time they were recognised.
• Grace Latter is a writer and advocate for invisible illnesses