Together with hope and acceptance, positivity forms the triumvirate of most misunderstood terms in chronic illness spaces and in society. In chronic illness forums, people share their ups and downs, their wins and defeats. I have noticed that when someone…
Early in the SARS-CoV-2 pandemic, the WHO said things like “Most people will experience mild symptoms,” meaning they will not require hospitalization. Most people, when thinking about a “mild” illness, probably imagine something annoying, but not really limiting. A mild…
I have to preface this text by saying: I strongly object to narratives like “Everything happens for a reason” or that having one’s life destroyed by a chronic illness “teaches you something”. That is toxic positivity and serves only to…
When I first got sick in early 2022, people sent me good wishes: “Get better soon.” Doctors told me: “Most people get better from Long Covid within a few months.” So, I planned to work a reduced schedule for a…
One cannot talk about hope without talking about acceptance, because acceptance is often mistaken for “losing hope.” The reality couldn’t be farther from the truth. Acceptance and hope are not mutually exclusive; the question is, “Hope for what?” Ever since…
Hope: a feeling of wanting and expecting a particular thing to happen; something that you wish for. (Oxford dictionary) As a chronically ill person, how often do you hear “Do not lose hope”? News about supposed recoveries or scientific breakthroughs…
Myalgic encephalomyelitis is a severe, chronic neuroimmune disease that impairs multiple bodily systems, including the nervous, immune, and metabolic systems. The hallmark feature of myalgic encephalomyelitis is post-exertional malaise (PEM), or, more accurately, post-exertional neuroimmune exhaustion (PENE), but PEM is…