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It's Called Long COVID: Don't Take That From Us

This is one patient’s attempt at trying to explain to the public why the renaming of #longcovid to #pasc (#postacutesequelaesarscov2) isn’t sitting right with #longhaulers. This name was released by Dr. Fauci on Feb 24, 2021 at a @whitehouse briefing, and as you can hopefully understand, it’s rightfully NOT well received by the millions of patients globally battling this serious illness.

This condition has evolved in its naming since April 2020, with #longtailcovid, #longhaulcovid, #postacutecovid and finally Long Covid being the etymological course of the name. It’s taken a year of sacrifice, trauma, pain and frustration to even arrive at the community-recognized name of Long Covid, and the recent renaming of this condition sends many patients into a trauma response thinking: ‘they didn’t care about me then and they don’t care about me now’.

We know that labels are social constructs made by people within a society, but labels CAN matter, and especially when the neglected group has collectively agreed upon a name, and one that’s just become widely acknowledged.

While sequelae is defined as any “after effect of a disease, condition or injury”, it’s synonymous with mild post-illness maladies and often refers to a simply ‘residual’ experience. It’s also an inaccessible word that drives a further wedge in health education and access.

But unlike “sequelae”, using “Covid” shows severity: shows criticality. People instantly see that diagnosis and know it’s serious.

And do you know what Long Covid isn’t? ‘Just’ sequelae.

It’s organ damage across body systems. It’s serious health complications without answers. It’s trauma, neglect, abuse and unanswered questions and pleas for help.

Having a label be formulated by the people within the very population being labeled is imperative: otherwise outsiders, unfamiliar with what it means to truly be a part of the population being classified, damage that very population.

And while it’s good that there’s visibility, this is yet another example within #chronicillness and a stinging reminder to patients that our voices don’t matter. That our needs are an it’s been since the start of this pandemic.

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