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We're Already Dismissing COVID-19 Patients With Lingering Symptoms

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On May 2, Business Insider reported that some young COVID-19 patients are experiencing symptoms beyond the 14-day end point touted by the CDC and media. The article featured four patients in their late 20s and early 30s whose symptoms persisted for 21 to 48 days. Outside of this small sample, doctors acknowledge an unknown but growing number of “mild” COVID-19 cases enduring longer than expected. The World Health Organization cites a disease duration of up to six weeks.

All but one of the featured patients radiated health before contracting COVID-19: running marathons, hiking and enjoying high-intensity careers. They felt completely blindsided by the severity and duration of the disease. CDC guidelines led them to believe that their youth and health exempted them from suffering: they would feel mildly sick for 14 days, but it wouldn’t be that bad.

When their sickness endured longer than anticipated, these patients experienced a taste of life with chronic illness.

They felt guilty and anxious about not being able to work or plan for life post-illness. As I am currently on an indefinite medical leave from work at 24 years old, I feel their pain acutely. It’s impossible to navigate life when your symptoms flare unpredictably. It’s emotionally debilitating to be physically unable to work or live independently, especially as a young adult. It’s futile to plan for anything beyond the next few minutes.

Worse, the COVID-19 patients experienced the pain and humiliation of skepticism about their enduring illness. One said, “It was a very lonely experience for me… I felt kind of ignored by medical professionals because I think everyone had assumed you reach 14 days, then you’re fine, you’re recovered.”

Many in the chronic illness community have lived through that isolation for years. It is our reality. Having battled chronic illnesses for eight years, I know the agony of having medical professionals dismiss my suffering. One doctor told me I was merely experiencing stress due to excessive self-imposed academic pressure. One told me I was dehydrated, and yet another said I was just anxious and depressed, which was untrue. The more I insisted I was ill, the more I was dismissed. Eventually I did develop anxiety and depression because as I became more ill, I lost hope of being taken seriously.

It saddens me that some COVID-19 patients experience similar treatment. A Reddit thread claims that in the UK, patients with persistent symptoms are referred for psychiatric treatment, because doctors do not believe they could possibly still be sick.

The chronic illness community understands that medical professionals intend to heal, not harm. They make decisions based on the knowledge and guidelines available to them. Authorities tell them that these patients “should not” be sick, so naturally they follow that advice. From the patient’s perspective, however, it seems hurtful and dehumanizing to have someone tell you your pain cannot be real.

We with chronic illness fight desperately to convince the world that our suffering is real, while also fighting to prove we are equally capable as everyone else. @lornamcfindy described this desperately lonely experience when she tweeted, “Healthy people: I wish you knew how bone-crushingly exhausting it is to be this sick but having to work as hard at getting people to believe you as you do at just dealing with your illness every day.”

Now we find ourselves in the best position to understand what the newly ill feel, and perhaps they are in the best position to understand us as well. We are used to these feelings, but they are being confronted with them for the first time, which is scary and overwhelming.

We should believe COVID-19 patients claiming persistent symptoms. We owe them that, out of respect for their humanity. We also can validate their experience because it mirrors our own. Without further scientific research, laypeople and the medical community (including the CDC) should not engrave end dates on illnesses. Nobody understands this illness yet, so we owe patients the benefit of the doubt. Alleviating the stress of being dismissed might even facilitate recovery.

Perhaps the experience of denial and dismissal will open the eyes of COVID-19 patients with persistent symptoms. They are now uniquely equipped to empathize with the chronic illness community. It feels bittersweet to no longer be isolated in the pain we have suffered for years. I sincerely hope that some of these “normal, healthy” people who have had a taste of the chronic illness experience can become our allies and advocates. We must support each other in order to end the cycle of isolation.

With more voices united, someone might finally listen.

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Getty image via Nuthawut Somsuk

Originally published: May 6, 2020
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