This year has been tough on all, and for #LongCovid patients, also known as #LongHaulers, it’s been a perpetual nightmare…only seeing some solace due to patients helping patients.
While the western world (continued to) squabble over masks, hoard vaccines despite the need for vaccine equity, prematurely relax vitally needed public health measures for the benefit of businesses/the economy (not the lives of citizens), enabled new highly mutated variants to develop and spread, and altogether forgot how to spell compassion let alone practice it, Long COVID patients fought new and worsening symptoms (with some on 2 years of illness), with still no known pathogenisis or clear pathophysiology of the new complex chronic #PostViral illness, meaning no known treatments, medical help or disability support, and still no known prognosis for critical expectation-setting.
In short: it’s been a year. For our minds. For our souls. For our bodies. And especially for Long Haulers, and even more so, those within marginalized communities, including those in low income countries suffering without any support.
While a lot of bad occurred within the LC community in 2021 (more than shared here, including suicides within our community, leaders playing performative allyship for the appearance of looking like they care to help), our collective mental health could benefit from a lens of gratitude, even if the nuggets of gratitude feel few within the coal mine.
The good that occurred in 2021 in the LC community was because of patients.
The bad that occurred in 2021 in the LC community was because of non-patients (prejudiced, egotistical reporters, public health officials and medical practitioners, all unversed in post-viral #chronicillness, and the many ignorant within the public).
The “missing” in 2021 from the LC community was also because of non-patients, despite every effort of patients and their growing allies’ hard work, and is sadly much larger than the list shown here.
As a patient advocate who fought exceedingly hard in 2020 (media link in bio, if curious), I pray 2022 shines a much needed light on us, for the world’s sake.
Over 120 million people (and growing) rely on it.