Patient Spotlight: Does It Get Better?
“Does it get better?”
Someone just diagnosed with COVID-19 asked me this question, and a few days later I’m still struggling to find the right words to answer. Having been on this ride for 7+ months, a choreographed fight of opposing emotions is constantly getting in the way of my ability to assess my own situation and envision my future. Hope, fear, anger, and courage attract and repel, transform and dissolve with complex fluidity, in a never-ending metamorphosis of emotions.
I think a lot about my state of mind and what I knew about COVID-19 when my partner and I first got sick. I was counting down the days until we would reach day 14 after symptom onset. At the time, hospital admission data indicated that if one didn’t end up in the ICU within the first two weeks, chances were that COVID-19 would be a smooth ride, soon to be a turned page, left in the past and transformed into speculation of how things could have gone differently. I remember the first time I talked to someone who had tested negative and was experiencing COVID-19 symptoms. I hung up the phone feeling a mix of relief and shock. Having tested negative had left us in a void of abandonment, isolation and confusion. We had been dealing with a rollercoaster of severe symptoms for 10 days, and we both were in really bad shape. Just like us, this person had also tested negative, and they knew someone else in the same situation.
“It’s not just us,” I told my partner after the phone call. He let out a deep, yet apprehensive, breath. “There is more. They are on week 4 and still experiencing symptoms, and they know someone on week 5 who still feels extremely ill.”
We looked at each other for a while. We both wanted so badly to believe that wouldn’t be our situation. “We’re young, we’re healthy, we’re at the prime of our lives, this can’t be it”: these words floated in the air as we contemplated a difficult future with fear and disbelief.
Image by Delia Rogers
Days passed, symptoms got worse, and I grew an intense urge to connect with other COVID-19 survivors. At the time, stories in the media only portrayed people who had been admitted to the hospital and seemed to have had a full recovery. Meanwhile, we continued being haunted by the isolation of our experience, and the multitude of complex symptoms. On day 15 after symptom onset, I read Fiona Lowenstein’s op-ed in the New York Times, where they described “recovery” experiences that sounded just like ours and, more importantly, mentioned the only thing that has brought us hope and help so far: an online support group on Slack for people experiencing COVID-19 symptoms.
I’ve been a member of the Body Politic support group for nearly seven months now. From listening to the collective voices in my support group, I know that some people who have been ill for months do get better. I usually browse the #recovery channel in the support group, daydreaming and snacking on bits of hope that survivors share. I also listen to voices on the other side, including my own, telling a different story. Although for many—including myself and my partner—the timeframe for recovery is unpredictable and there’s an extensive list of unknowns, there is one thing I am certain of with all confidence in the world: we, COVID-19 patients and Long Covid fighters, can get life-changing help and comfort from our community. Our collective experience is the most powerful source of expertise we have.
While I have been humiliated, gaslit, discriminated against, and neglected by doctors, the Body Politic support group is where I have found solace and resources to manage symptoms and improve our quality of life. Thanks to this community, I have found a diet that tames the wild range of GI symptoms. Thanks to this community, I know a list of supplements and over-the-counter remedies that ease symptoms and give us some comfort. Thanks to this community, I know that others are also struggling to explain this experience to their families, friends and co-workers. Thanks to this community, I have learned to be patient with, listen to, and respect my body and limits first and foremost. Thanks to this community—my community—I know my experience echoes that of thousands of others.
Do I think it gets better? In a way, I think it does. While my body still struggles on a daily basis, I am working hard towards healing the grief over my lost health. I still worry a lot about the future, but I am trying to extract more from what the present has to offer. I got better at dealing with this, and my support group was fundamental in getting me here.
If you’re at the beginning of this experience, my message to you is: you are not alone. While “better” can be subjective, harnessing the strength of your community of COVID-19 and Long Covid patients is an undeniably powerful aid in symptom management and recovery.
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Letícia Soares (she/her) lives in London, Ontario, Canada and works as a postdoctoral researcher, studying how wildlife handles infectious disease. She first started showing symptoms of COVID-19 in mid-April 2020, and she was generous enough to share what she has written with Body Politic.
