Staying at home has been a strange time for many us, and perhaps more so when you live with chronic illness. While we are often used to being home either entirely or more often than others, the climate in which we are doing so now feels very different.
This time has shown us a lot about how health is viewed by others. Sadly, it’s often been rather negative and hurtful. Longer-term though, we can only hope that this overwhelming time leads to a positive shift in how chronic illness is viewed and people are recognised and cared for by others and society as a whole.
1. A support network is really important
I know I am very fortunate for this. Being home has meant being very dependant on others for food deliveries, pharmacy supplies and some general ‘life’ organisation things we all need to do. I’m so thankful to so many people, including my brother-in-law who dropped cleaning products around when none arrived in my supermarket delivery and the drivers who have read the ‘high risk household’ note on my door and been respectful of keeping their distance.
2. Medical appointments can (sometimes) be better over the phone
As many people of us did, I panicked about not being able to access medical care during this time. Going into a hospital is not what we want to be doing right now unless we have to, so phone appointments have been so welcomed. I’ve really been impressed by how my doctors have adapted to this and talked through everything with me over the phone. In fact, sometimes it’s better — less tiring, no travel and no train fares to pay for!
3. Many jobs can be done from home
It’s really been noticeable how many companies have adapted to at-home working during this period. With FaceTime, Zoom and Skype, meetings are held with each person in their home and email and messenger services have been used to the max. For the most part it seems as though many companies have managed to keep going.
What this tells us with chronic illness is more problematic though. Personally I was ‘let go’ from my job due to my conditions, in part I believe because I asked to work from home at times. As many of us know, flexible working, and working from home has often been denied to those with chronic illness and many have had to leave their jobs because of it. I hope that in the future, companies are more generous (and lawful?!) in offering these options to everyone who requires it.
4. Mental resilience
On social media a common post that went around was how those with chronic illness had been ‘training’ for quarantine all their lives. It’s kind of true in a way. I think many of us have built up a mental resilience about being alone or not seeing others as much, and are good at coping in difficult situations. That doesn’t mean it’s easy though, especially in these circumstances.
5. I already know how to spend my time at home
As well as building mental resilience, I feel as though I have learnt how to stay home, and how to occupy my time. Some of my friends have found it difficult and said they have nothing to do. I’m so thankful I already knew how to spend my time and fell comfortable being alone.
6. Media language around health conditions is (deeply) problematic
Well, I’m not sure how I can do this topic justice to be honest. As many have said far more eloquently than I can, media language around the virus and health has been deeply problematic, and so upsetting for many. The narrative of it ‘only’ affecting the elderly and those with underlying health conditions was pervasive, and made many of us feel as though we were disposable persons and ‘less than’ the young and healthy. I’m sure I don’t have to say that our lives are equally important, and equally worthy.
7. I had been pushing myself too much before we were staying home
Having no choice but to slow down has really shown me that I should have been doing it prior to quarantine. My fatigue levels have a been a bit better and some of my other symptoms too.
Prior to staying home I was out a fair amount for someone with my health difficulties. I was constantly travelling to medical appointments, often involving an hour (sometimes more!) on multiple trains or buses. It wasn’t unusual for this to be two or three times a week. Then I would go and see friends or family, do the weekly food shop, the pharmacy run for medications and so much more. No wonder I was exhausted!
8. Certain products make life at home far easier
Being home full-time has taken a little adjusting to, but a few products have helped this. A fan to stay cool on hot days has been essential, and a pedal exerciser means I can keep up some level of fitness despite being home.
9. Gratitude is really powerful during difficult times
With everything so overwhelming and difficult, gratitude has felt really important to me the past few months. Anytime there are too many negative thoughts in my head I go back to what I can be thankful for. A comfortable home to stay in, my friends and family and accessing some medical care via phone appointments. My cat making me laugh, a good meal or finishing a 1000 piece puzzle that gave me moments of peace and calm. There are so many small (and bigger!) things in my life to feel thankful for.
10. The online chronic illness community is truly wonderful
I’ve already mentioned the online chronic illness community, but it felt worthy of its own section! I have been so heartened by how the chronic illness community has pulled together in support during this time. On Instagram we have chatted about daily life and the good and more difficult days. Over on Twitter we have quickly shared when food delivery slots come available. The friends you meet online truly are some of the most supportive friends there are.