The Mighty Logo

10 Things I've Learned About Chronic Illness During COVID-19

The most helpful emails in health
Browse our free newsletters

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 feels very different.

I feel that I have learned a lot both about myself and how health is viewed by others.

These 10 things I have learned about chronic illness during quarantine are those that have struck me most, from being ‘used’ to being home to having the very unfair (to say the least) way that people with disability and chronic illness have been treated in the past (and present day) made very visible. We can only hope this overwhelming time leads to a positive shift in how chronic illness is viewed and people are recognized and cared for by others and society as a whole.

1. A support network is really important.

I know I am very fortunate to have this. Being home has meant being very dependent on others for food deliveries, pharmacy supplies and some general “life” organization 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.

I’m also very thankful for the online chronic illness community, but I’ve given them their own separate shout-out below!

2. Medical appointments can (sometimes) be better over the phone.

As many 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. 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 them.

4. Mental resilience.

On Instagram a common post that went around was how those with chronic illness have 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 learned 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 had my blog to work on, knew that I loved to potter around the kitchen making low histamine recipes and had a ton of books, puzzles and films to watch. There hasn’t been a moment that I’ve felt particularly bored!

A banner promoting The Mighty's new Navigating Coronavirus Together group on The Mighty mobile app. Click to join.

6. Media language around health conditions is (deeply) problematic.

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 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 traveling 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 I’ve loved my Nutribullet to make smoothies when fatigue hits and a full meal just feels like too much work.

Most of all though, my pedal exerciser has been game-changing. Exercise and chronic illness is very individual, but it helps my dysautonomia symptoms so much. Being able to pedal away at home has been a really brilliant way to exercise in front of the TV!

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 my 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 can truly be some of the most supportive friends.

Getty image by iPressman.

Originally published: August 7, 2020
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home