Patient Spotlight: I Thought I Would Be Better By Now
I thought I would be better by now. I really did.
Like so many others, I thought I would be better after two weeks. I certainly didn’t expect to be here eight months later, still counting the days that have gone by as I’ve waited to feel like my “normal” self.
I am trying very hard to accept my new normal. One with tachycardia, asthma, and daily fatigue. One where I can’t always tell what things taste or smell like. One where I have memory loss. One where I don’t recognize myself in the mirror, because I’ve lost so much weight since March. One where I spend nearly all of my time alone in my apartment, don’t go out with friends, and have a completely virtual support system. But also one where I am overwhelmed by the gratitude that comes from knowing full well that things could be so inconceivably worse, and where I am a stronger person (sorry, corny, I know) because of how hard this has been.
The early narrative around young COVID-19 patients and survivors was almost universally that if you were healthy before contracting the virus, your recovery would be quick and linear. Every day I hear or read more stories that prove this is not always the case. I know it from my own experience, too. And even if you are like me—lucky enough to remain high-functioning despite prolonged illness—there’s also the mental and financial impact of the virus, which I haven’t seen discussed as often as it should be.
Artwork by Delia Rogers
I know that many people are struggling to cope with increased isolation. Being sick has amplified a deep loneliness that I suppose I’ve always felt. Suddenly I’m too aware of how far away my family is and the exact, very small number of people in my life who will really be there for me when I need them. This summer, when I was at my sickest, it seemed as if everyone I knew was traveling with their friends, carrying on as usual. I was alone in my apartment, vomiting, dizzy, and nauseated constantly, because my smell/taste issues had made it so difficult to eat. I had to cut myself off from social media because I was overwhelmed—mostly with jealousy that my peers were having fun while I was stuck inside feeling like my body was falling apart. But I was also just upset from seeing people willingly putting themselves and those around them at risk of getting sick. I had to back away and focus on my own life.
Being online (in moderation, and after unfollowing the aforementioned risk-takers) has been essential for me throughout quarantine, both for staving off that loneliness and finding answers to the questions that my doctors have dismissed. I might not be seeing many people in person, but I’ve found support in surprising places—from high school classmates to anyone who, for whatever reason, willingly suffers through my Twitter rants. And finally, I have online long hauler support groups, to remind me that I’m not alone after all.
Within these groups there are many women whose persistent symptoms were also written off as anxiety, and many young people who know that even a “mild” case of this virus can derail your life entirely. Many of us voice similar worries about a system that has excluded us from statistics, benefits, and treatment, and continues to minimize the severity of our cases. These support groups have helped me so much and made me feel like I have a safe space to talk about what is going on and form new relationships instead of focusing on those I don’t have. And until there is a better system for long-term post-COVID care, my hope is that our allies give these groups as much support as possible and amplify our message: that there are far greater complications to this virus than any of us ever expected.
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Casey O’Connor was gracious enough to take the time to write her story and share it with the Body Politic community. Casey (she/her) is twenty-six, living in New York, NY and working in non-profit fundraising/operations. Her COVID symptoms began on March 14th.
