Participant 1
Story
I became sick with Covid way back in March 2020, during one of the first weeks we had confirmed cases in our state. I was exposed at my job at the hospital where I work as an RN (so early on that we weren't even wearing masks or screening patients yet...this became mandatory a couple of days after my exposure.) I developed symptoms shortly after and ended up feeling the sickest I can ever recall being for over 2 weeks. Back then it was thought and reinforced that folks who were young and healthy would fair just fine if they got Covid - nothing more than a bad cold or flu. I (and my PCP) believed that at 34 years old, with no major underlying health issues, fit into the young and healthy category so I stayed home. Even when I was having sky-high fevers that persisted for over 10 days, and became increasingly short of breath, I avoided the hospital (as encouraged and instructed by my PCP as well as employee health) while being treated for a presumed secondary pneumonia. I rushed back to work as soon as I met the criteria (fever-free for 72 hours with symptoms improving) even though I still felt crummy, as things at the hospital were getting really bad with Covid cases and I wanted desperately to help. I returned to work, caring for critically ill patients in our makeshift ICU overflow department while I was still finishing up a course of antibiotics, steroids and using my new inhaler regularly. Fast forward 8 weeks - I still wasn't feeling "right". I was working countless hours in the ICU, enduring long, stressful midnight shifts. I started chalking up all of my ongoing symptoms to other thing-s Fatigue: I was working midnights and not getting enough quality sleep. Shortness of breath: We were wearing super snug-fitting N-9S's with a surgical mask and face shield over...wasn't everyone somewhat short of breath? Tachycardia: I was consuming caffeine to help stay awake and probably not hydrating enough during those long, exhausting shifts. I attempted to get back into my workout routine and training but was unable to tolerate a simple, brief walk on my treadmill. I eventually sought care from my PCP, who dismissed most of my symptoms and concerns. I felt like I really had to fight to get care, to get anyone to listen to me. I struggled physically, mentally, and emotionally for months and started doubting myself and feeling like I was "crazy" for not feeling like I was back to normal yet. Eventually I found physicians who heard me, and although they didn't quite understand themselves why I wasn't better yet, they assured me that I wasn't crazy, that I wasn't the only one still not "recovered" months after being sick, and that they would try their best to help me. After countless tests, doctors' appointments, hospital visits, referrals to specialists and rehabilitation services I finally have some diagnoses, treatment plans and a healthcare team who has my back. 20+ months after my initial illness I now have moderate -severe new onset asthma and viral-induced cardiomyopathy with reduced heart function. I suffer from crippling fatigue, ongoing shortness of breath, cough, chest discomfort, exercise and activity intolerance and sleep disturbances. To top it of I've become quite depressed through all of this. I've had to miss a lot of time off work; I've been through pulmonary rehab and am currently in cardiac rehab. I am on 3 different heart medications to control my erratic heart rate and to help strengthen my heart. I need inhalers daily. My medication/supplement list is way longer than it should be at my age. Prior to becoming sick, I was in the beginning stages of becoming a living kidney donor for a good friend of mine - as I was very healthy - and had just found out I was a match in February of 2020 and ready to proceed. Because of all of this, I can no longer help my friend in need. My life has been negatively affected by long-COVID in more ways than I can count. I am still fighting every single day, and I am not giving up hope. I celebrate every little improvement and try my best to remain positive. I am constantly reminded how much worse this could be, as I've held the hands of multiple patients while they take their last breath from the same virus I have "recovered" from.” - COVID Long Hauler
Key
Body Posture: I am sitting on the ground, slumped over with my head hanging. I feel like this represents how I am when I feel my worst. I feel like I've been kicked down by all of this, like I am weakened, and I often feel defeated.
Colors: The outline of my body is grey and black - how I feel like my body is now (I feel like these colors represent how I feel dark, tired, sickly, and sad). The colors above me around the photos tell a story - the photos with yellow around them are the me "before" Covid -Vibrant, active, healthy, and happy. The photos with the orange around them are "during" Covid - including depictions of my illness, what the media was telling us at that time, and of working as a nurse in the Covid ICU. There was a lot of uncertainty. The photos surrounded by red indicate "after" Covid - the Long-Haul life I am currently living. Many of the colors blend together, as I feel three phases of my Covid journey have.
Marks on/under the skin: The dark circles under my eyes represent constant fatigue. Tears streaming down my face show the depression and agony this has caused. The flames around my lungs indicate the burning sensation/pain in my chest and lungs, and the damage to them. My heart is black and broken.
My Logo/Slogan: I chose a dandelion growing out of a rock. As a weed, dandelions are very resilient. I'd like to think that through all of this I remain resilient, and maybe even a little bit stubborn like a weed that is difficult to get rid of, growing strong out of something that isn't very nurturing or ideal for growth. Also, people commonly "make a wish" on dandelions, which I am holding in my hand, representing wishful/hopeful thinking.
Personal strength: My personal strength is that I remain hopeful and optimistic and that I am willing to put in the work to get better. I have goals, and I have a great support system, and I am doing my best to move forward one step at a time.
Support Structures: My support structures are what hold me up/are underneath me - support groups, friends, my fiancé, my dog, my healthcare team, and the hope that I hold on to (in my hands). The quote below me is a phrase I always try and remember when things might not be going in the right direction - "Healing is Not Linear".
Future: My future is in the bright sun above me - and ideally has me back to my "pre-covid" days.
Message to Others: My message to others would be just to do your best to avoid getting sick. That there is so much unknown with this virus, and we have no way to predict who may be affected with long-term issues like this. I never would have imagined I would be fighting almost 2 years later. I did not have time to place this somewhere on my body map, as I had a very difficult time trying to figure out what I would want to say to others. As a healthcare worker currently being rolled into "round 4" of Covid at the hospital (and this time it honestly feels much, much worse...and without the support from the community, etc - we're not "heroes" anymore), I am watching young, unvaccinated folks die, alone, and I feel like the message we as healthcare providers have been trying to send to others is being blatantly ignored and/or not taken seriously at this point, and I feel like we are wasting our energy trying to get others to help us by helping themselves.