Lessons Learned and Positive Life Changes
While our participants found that the impacts of living with long COVID were extremely challenging, the experience sometimes also led to positive changes in their lives. Many of our participants shared life lessons they have learned and positive changes they have made to the way they lived before long COVID. These include learning to slow down and set boundaries, appreciating small, but meaningful, things, focussing on what truly matters, finding new creative outlets, and feeling more empathy toward others.
Slowing down and setting boundaries
Many of the people we spoke with described their lives before COVID as busy and hectic with work, family responsibilities, and other activities. Several discovered the value of slowing down when they were forced to do so by long COVID.
For example, Katherine, described “having extra time for self-reflection” as the “blessing of being completely off work.” Emily found, “The most positive aspect for me … was it … forced me to slow down … to connect with my children in a way that I hadn’t done … My life is less busy than it used to be, which I appreciate.” Violaine explained that she, too had slowed her pace of life considerably and now appreciated spending more time with her loved ones: « Mon rythme a ralenti … je travaillais tout le temps, tout le temps, tout le temps. Donc je suis à la maison avec mon conjoint, avec mes enfants. J’apprécie plus que jamais ce que ça veut dire, cette vie de famille-là ce que ça veut dire d’avoir des proches, des gens qui nous aiment! » [My rhythm has slowed down … I was working all the time, all the time, all the time. So, I’m at home with my partner, with my children. I appreciate, more than ever, what this family life means, what it means to have people close to you, people who love you!] Translation from the original French. At times, aerik has been bedridden but, they explained, “I would spend … most days in my bed … just lying there and watching the sun move across the sky or watching the light change in my room … There was a way that I … was able to appreciate the beauty of slowing down …[and] deeply spiritual connected parts of myself that I get to access when I’m that sick.”
Nicole says she now knows she was doing too much.
Transcript
If I focus on how much I’ve lost or how much I used to be able to do, then I wouldn’t get out of bed in the morning. So yeah, I’ve learned to slow down, I’ve learned to pace, I’ve learned that I was doing way too much. I’ve learned […]
Several participants also talked about how they never said no to anything before they caught COVID and would always put other people’s needs before their own. Living with long COVID meant they were no longer able to function like that and have had to learn to set boundaries in order to protect their health.
Carrie 2 says learning to set boundaries has been a gift to herself.
Transcript
Well, in a strange way, it has helped me to set boundaries because I mean, I really never said, no. It was really – if I could, I would. If somebody needed me to do call, I would say yes. There was no – I would never say, no to […]
Appreciating small things and focusing on what matters
A common theme, among participants, was that living with long COVID had increased their appreciation for small things and simple pleasures. Some also talked about how they no longer worried about little things that really weren’t important.
Paulina was reminded “how amazing my kids and my husband are … It’s just the little things. You know, sometimes out of the blue they will make me breakfast and try to make healthy things and bring me some cucumber slices. Just little things, you know.” Carrie 1 says she has “I’ve always had house plants. But now I really love my houseplants. I spend a lot of time taking care of them. They bring me a lot of joy. I love coffee. And so I have made myself one really great coffee every day. And I really enjoy it. Every time I get to go outside, which isn’t very often, when I do, oh my God, I’m so happy. I just really appreciate the experience of being outside more.” Louise realised that she didn’t need “to worry about every single little thing that happens … I guess it’s that ‘don’t sweat the small stuff’ kind of thing. If you get a hang nail, it’s not the end of the world, kind of attitude.”
George now makes conscious choices about what matters most in life.
Transcript
I think a really positive thing has been sort of a deep focus and appreciation on what elements of my life are really important and how I spend time on that. And even as I think about structuring the next five years of my life or ten years of my […]
Finding new forms of creative expression
Because they were forced to slow down, and could not pursue their usual activities, some of the people we spoke with found new forms of creative expression. For example Maggie explained, “I generally don’t have time to do it when I’m working … [but] I’m starting to write some fiction, which is just fun. I am reading more than I have been able to, again in the past, because I didn’t have time … So, you know, I have taken an interest in reading where I couldn’t before.”
Luna discovered an unusual way to express her creativity.
Transcript
One thing that I, [laughs], I ended up in sort of an obsessive origami thing where I created all of these fabulous sculptures and things because it was something I could do while sitting. And so for the hours and hours that I needed to sit and not work, and […]
Carrie 1 found a new way to practice photography.
Transcript
I was a world traveler, and I loved to spend my money traveling all over the world. And that was really important to me. I’ll never do that again. But I still love photography. And what I loved about traveling was photography. I’ve taken up what they call car photography. […]
More empathy and understanding of others
The experience of living with long COVID led several participants to empathize more deeply with others. Maggie has trouble lifting her arms which restricts certain activities. As she explained, “Not being able to dry my hair sounds like the stupidest thing in the world, but when you understand the potential impacts of a chronic illness, I think it leads to more empathy. So, I think I’m developing more empathy which is a positive thing.”
Carrie 2 finds that living with long COVID has deepened her understanding of how to care for chronically-ill patients.
Transcript
I was always very interested in working with my patients who had chronic illness and fibromyalgia. This gives me a different understanding and there’s been evolving understanding of how to deal with activity and pacing, which – I mean what I was taught is not accurate. I was taught when […]