“The reality of the Long Hauler - and of all infection initiated chronically ill persons (#MECFS, #POTS, #ChronicLyme, etc.)…includes an external world that inflicts pain onto our already painful internal one." 🧵 & artwork by BP Vice Pres. Lauren Nichols instagram.com/p/CXpM1gErbxR/
The external world of the #LongCOVID patient
In the medical community, #LongCOVID patients are at times fortunate to find doctors and researchers who validate their symptoms and seek answers, while others dismiss or deny their experiences.
In the general public, #LongCOVID patients and allies share their experiences or are committed to listening, reading, and understanding as well as they can. Meanwhile, others in the public continue to deny COVID’s severity and refuse to practice safety measures.
In the best cases, media & government acknowledge #COVID19 as a global crisis in need of urgent action while sharing facts about #LongCOVID patient experiences. At worst, responses are slow & inadequate or counterproductive, misinformation is spread, & patients are discredited.
The internal world of the #LongCOVID patient
“Our sharing is not to elicit fear or panic. It’s the opposite: It’s to help you not to experience what we do daily, with no treatments or cure or known prognosis. The fear felt by living this illness is scarier than the knowledge of this illness.”
"When we share, we do not deserve to be harassed over vaccines or your politics. We deserve the opposite: To be shown respect for exerting our limited energy to help you learn through us instead of becoming one of us.”
“Instead of doubting, harassing, or attacking patients for offering truth and transparency, attempt to listen. They’re trying to help you.”
Share this Scrolly Tale with your friends.
A Scrolly Tale is a new way to read Twitter threads with a more visually immersive experience.
Discover more beautiful Scrolly Tales like this.