Participant 11
Story
“Early March 2020, I moved with my husband and three children from London, England to Michigan. Just nine days after our move I began having all the symptoms of Covid-19. However, as a healthy, active 38-year-old woman, I was not able to get tested. In a matter of days, the lockdown began! Apart from some family nearby, we knew no one in the area. As Covid was a new thing, doctors were not able to give us much information of what to do other than isolate at home and try to recover. My husband, myself and our three children got Covid in varying degrees and varying symptoms! Thankfully, none of us ever had to be admitted to the hospital. My Covid symptoms, however, kept lingering. I never fit the “2 week” recovery that the CDC stated was the duration of Covid for those not admitted to hospital. No one knew anything at that point about Long Covid. I felt very alone. Understandably doctors didn’t know what to tell me. Many things “checked out” ok, but I would always leave their office feeling like I had educated them on what Covid was like rather than the other way around. Other times, I felt as if I wasn’t believed or fully listened to. Much of my support had to come from online groups or people in other places who were going through the same thing. I followed the research of many doctors who were experiencing Long Covid to and were desperately trying to find answers for themselves. As I write this, I will be 2 years on from my initial Covid infection. I am still dealing with things in my body that Covid has messed up. I used to be very active and run. I still have not been able to get back into running. I have found other ways to get exercise, but nothing that is too strenuous. Some days are beginning to feel normal, but there are also days that the symptoms flare. I have learned to be grateful for the healing that has already happened and hopeful that there will be more. Things like art, nature, breathwork, yoga and my faith have all been incredibly helpful in my journey. They have helped shape me into a more whole person through this dark time, too. I remain hopeful for those of us still battling with Long Covid. That we will have answers, healing and long, full life!” - COVID Long Hauler
Key
Life Before/During/After: I used sunshine, darkness (with the sliver of a moon); and then a mix to represent how I feel/felt before, during and after.
Before: I could use my body to exercise, work hard, multi-task, do lots and then all of that came crashing down!
During: Felt very dark (the moon represents the sliver of hope I always clung to!). I couldn’t physically do much; couldn’t think properly; sometimes couldn’t remember things. No one knew what was happening to me or how to help me. I felt very alone.
After: Well, with long covid, there doesn’t seem to be an after yet! But, even though there’s aspects that are unknown, I’m learning to be gentle with myself, learn new rhythms of doing life, and understand my body more.
Body Posture: I laid down to draw my body as this was the posture I was in when I felt the worst! The fatigue and exhaustion was immense! In the early weeks, when the initial covid was bad, my lungs were struggling to fill enough so I could only lay down because I couldn’t breathe properly.
I drew my body myself (instead of getting one of my kids to help!) because it represented how alone I felt at times during this whole covid and then long covid experience.
Marks on or under the skin: I used bandaids to represent all the physical "marks" that covid has caused on my body. Each one centers around a specific area but as you can see, covid makes its way around the whole of a person. It has affected my lungs, heart, circulatory system, nervous system, brain - the list goes on!
Color: The colors portrayed in my “Life Before / During / After” represent how I feel about those very times. I depicted life before as very bright, vivid, “sunshiny”, and the covid time as very dark. This long covid period has been some of the darkest times I’ve experienced. And there really isn’t a post-long covid yet, but I am doing better than I was. In my “Life After”, I attempted to portray through color that there is both the bright and shiny but also some of the dark as well; we can grow and learn and be in both of those spaces to be a whole and healthy person.
Personal Symbol: I chose a butterfly to represent my personal symbol. Having Long Covid has been a very dark experience at times. Very lonely. Early on, I found the image of the caterpillar being in its cocoon in the dark and all alone very comforting. I knew that he must go through that experience in order to emerge as a butterfly. So for me the butterfly represents hope. I have learned much from nearly 2 years of long covid and I am hopeful for healing and that this experience will have changed me for the better.
Personal Slogan: Hope has been a very important part of my covid journey and recovery. There were times I felt a loss of it and times when it carried me through. I became very aware that to continue the healing process I had to cling for dear life onto it!
I love this quote by Emily Dickinson: "Hope is the thing with feathers that perches in the soul and sings the tune without the words and never stops at all."
Future: I am very hopeful for scientific and medical understanding and treatment for long haulers. I want healing. I want to live healthy and fully: mind, body, soul. I want to be able to run again without having a crash the next day or have my heart race extremely high. I want to be ok with my limitations, too. I want a healthcare system that sees the WHOLE person.
Message to others:
To Those Not Experiencing Long Covid,
This is such a new condition, we are often disregarded, not believed, left to fight for and by ourselves. This is a “whole body”-affecting illness. We can’t be sent to just one department - like cardiology. Start treating the whole person. Also, please listen; help us feel we are not fighting this alone. Much of what is so debilitating about long covid is hard to see - the exhausting fatigue, the brain fog, the mental aspects, the waves of feeling okay then not. Be gentle; be understanding; believe us.
To My Fellow Long-Haulers,
You are not alone. Be gentle with yourself. Do not push or force your healing. Unfortunately, it can’t be done that way with long covid. There will be waves and ups and downs. The healing is slow but keep hoping! Dwell on the positives, on the things that have gotten better, no matter how small those things are. Practice gratitude. This seems to be a whole-system disruption, so tackle it with whole-body healing practices that bridge body, mind and soul. Get good sleep (at least try, when the insomnia isn’t surging!), eat nourishing food, do gentle exercising, pray or meditate, do breathwork, take care of yourself. And never lose hope!