Title quotation adapted from @StephTaitWrites
Lockdown is often called the ‘remote access revolution.’ As in-person interaction was completely replaced by online interaction, as leaving the house was replaced by staying at home all day, as events were replaced by sitting on the sofa with your laptop, people with chronic illnesses could access more elements of ‘daily’ life than ever before. In her online blog, Chloe Sargeant explained ‘since everyone is in the same boat, the world has turned into some sort of hyper-accessible utopia to me for the first time.’ While it is generally acknowledged that this has happened too late and it shouldn’t have taken a pandemic for these things to happen, we must now take the opportunity to ensure that it continues in a post-pandemic world.
‘Chronically ill’ covers a wide range of conditions but symptoms often include a lack of energy, constant headaches, sickness, cognitive issues, dizziness, heart palpitations, physical weakness. This is not an inclusive list and many other symptoms are caused by chronic illnesses. However, one unifying factor is that they are long-term. Many people with chronic illnesses were housebound long before the pandemic, and this will continue after the pandemic. As many people slowly regain the lives they had before, it is paramount that we do not forget the people whose lives are like lockdown all the time, on top of living with constant sickness, illness, pain, doctor’s appointments, lack of energy, social exclusion.
I’m not going to pretend that lockdown wasn’t tough for everyone. But there are ways we can all make a post-lockdown world less tough and isolating for people suffering from chronic illness.
Likewise, it’s important to remember that lockdown has not been a positive experience for everyone with chronic illnesses. While greater access to things that once excluded them does seem to be positive, the fear of getting ill, of course, remained, alongside everything else that comes with having a chronic illness. In a survey, many respondents reported experiences of discrimination and ableism in shops, the NHS, the media, and public conversation. People also reported feeling unseen, unheard, and unvalued.
As a non-disabled person, this is by no means intended to be speaking ‘for’ people who I cannot relate to. But from speaking to people affected by chronic illness, reading blogs and articles (many linked in this article – would 110% recommend you to read them if you can), I have learned that there are things that we all can do to ensure greater inclusion. In the words of Helen Wilson-Beevers, ‘crushing exhaustion and agony are difficult enough to manage but lack of awareness is something which can be changed- and societal adaptions accordingly made.’
A more general sense of empathy and understanding
Research by the Chronic Illness Inclusion Project (CIIP) captured the experiences of people with energy limiting chronic illness. In their recent survey of over 2,300 people, social isolation and loneliness were rated as the biggest social problem they faced – more than the health condition itself. This is shocking. Therefore, it must be changed – we can all work to find ways to continue more inclusive accessibility that we all realised worked in lockdown.
Empathy and understanding are both senses we can all continue to cultivate. Some people with chronic illnesses do not function early in the morning so appointments in the early morning are simply not viable. Tragically, there are multiple reports of people with chronic illnesses being considered ‘lazy.’ This must stop.
Likewise, agreeing to simple requests such as ‘please can you write that down’ or ‘please can you talk slower’ should be just done, rather than questioning or simply brushing the requests off.
The Chronic Illness Inclusion Project and the Chronically Capable platform are fantastic resources to learn more about the experiences of people with chronic illnesses. Likewise, on social media, @youlookokaytome, @thedisabledhippe and @raziblog on Instagram are three of many people who describe their experiences of chronic illnesses. Also, Miranda Hart often raises awareness of the experiences of people with chronic illnesses.
Priority shopping slots for the most vulnerable
Priority delivery slots at supermarkets should continue. For people who are immunocompromised, priority delivery slots and no-contact delivery create a much safer mode of contact.
Relatedly, 86% of respondents to a Chronic Illness Inclusion Project survey reported that the pandemic had hindered their ability to access food and essential supplies: people with chronic illnesses were not included on the vulnerable list guidance. For example, although ME is a neurological condition, it is not specifically named in the guidance. This can be prevented after coronavirus by ensuring that the vulnerable list continues and that people with chronic illnesses are listened to and incorporated into government guidance.
Online meetings rather than having to go into an office
Lockdown has proven that online meetings and catch-ups are entirely feasible (and more convenient for some) online. This option should continue for everyone with any necessary meeting, including meetings unrelated to work.
Wear a mask if you are ill
Eventually, we will not be required to wear masks. When this time comes, we can still wear masks as a simple preventative measure, like when we are ill with flu or anything else contagious. A cold for someone who is already ill 24/7 is just so awful.
Continue a wide range of streaming sites
For example, some people with chronic illnesses normally have limited access to the theatre and the cinema. However, over lockdown, online streaming sites allowed much greater access. Of course, the theatre and cinema need to continue making a profit, but wider online streaming services should remain post-lockdown. This could also be adapted for student theatre.
For people with chronic illnesses who are able to work, workplaces must be adapted for a greater online capacity.
For years, people with chronic conditions and disabilities have requested classes or meetings via video link. The pandemic has proven that it is possible and we should all work to continue hybrid online/in-person events in the future. According to research conducted by Chronically Capable, 59% of workplace adaptations cost absolutely nothing. And the rest typically costs $500 per employee, which is about £360.
There is no standard accommodations list for the chronically ill community as their needs fluctuate. However, flexibility is the most commonly reported accommodation request. Most people have now experienced making work and social life flexible throughout the lockdowns, and in a lot of cases, flexibility can be continued afterward. It is so possible that some people with some chronic illnesses can have employment at the same level as people who do not suffer from chronic illness. There are many benefits that employers reported receiving after making workplace accommodations and these far outweighed the costs. The most frequently mentioned benefit is that the company gained a valuable employee. People with chronic illnesses should not be seen as a ‘burden’ for employees.
In some small ways, the lockdown has left many people with chronic illnesses hopeful for a more inclusive future: more people can access elements of ‘daily life’ and many people are more conscious of including others. This is really promising and we can continue this after lockdown. We must all work to implement any of the above steps – as well as any other recommendations – so that all of us enjoy a fairer society.
More suggestions about how we can all support people with chronic illnesses are very welcomed!
Thank you so much to Isabella Briers for her fantastic insights and recommendations that helped to write this article.
Image credit: Ivan Radic on flickr