Hi Everyone!
As always, we ask that in order to participate in the weekly megathread, one self-identifies as some form of disabled, which is broadly defined in the community sidebar:
“Disability” is an umbrella term which encompasses physical disabilities, emotional/psychiatric disabilities, neurodivergence, intellectual/developmental disabilities, sensory disabilities, invisible disabilities, and more. You do not have to have an official diagnosis to consider yourself disabled.
Alright, with that out of the way, let’s talk about COVID-19, specifically the kind that messes with you for long time, possibly forever! <-- (so fun /s)
From the Wikipedia Page on Long COVID:
Long COVID or long-haul COVID is a group of health problems persisting or developing after an initial period of COVID-19 infection. Symptoms can last weeks, months or years and are often debilitating. The World Health Organization defines long COVID as starting three months after the initial COVID-19 infection, but other agencies define it as starting at four weeks after the initial infection.
Long COVID is characterized by a large number of symptoms that sometimes disappear and then reappear. Commonly reported symptoms of long COVID are fatigue, memory problems, shortness of breath, and sleep disorder. Several other symptoms, including headaches, mental health issues, initial loss of smell or taste, muscle weakness, fever, and cognitive dysfunction may also present. Symptoms often get worse after mental or physical effort, a process called post-exertional malaise. There is a large overlap in symptoms with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
The causes of long COVID are not yet fully understood. Hypotheses include lasting damage to organs and blood vessels, problems with blood clotting, neurological dysfunction, persistent virus or a reactivation of latent viruses and autoimmunity. Diagnosis of long COVID is based on (suspected or confirmed) COVID-19 infection or symptoms—and by excluding alternative diagnoses.
As of 2024, the prevalence of long COVID is estimated to be about 6-7% in adults, and about 1% in children. Prevalence is less after vaccination. Risk factors are higher age, female sex, having asthma, and a more severe initial COVID-19 infection. As of 2023, there are no validated effective treatments. Management of long COVID depends on symptoms. Rest is recommended for fatigue and pacing for post-exertional malaise. People with severe symptoms or those who were in intensive care may require care from a team of specialists. Most people with symptoms at 4 weeks recover by 12 weeks. Recovery is slower (or plateaus) for those still ill at 12 weeks. For a subset of people, for instance those meeting the criteria for ME/CFS, symptoms are expected to be lifelong.
Globally, over 400 million people have experienced long COVID.
Mask up, love one another, and stay alive for one more week.
It’s so frustrating, for sure. Like, my parents seemed to have some expectation that once I started anti-psychotics, I would be able to get back to a relative normal. They knew it wouldn’t magically get better, but they thought my condition would improve 'til I was able to achieve anything through hard work. Several med adjustments later I still have the occasional psychotic episode, schizospec negative symptoms have been kicking my ass, and my condition seems to have steadily declined. I did recently get a new med tacked onto the list, and it seems to be helping some of the negative symptoms. Some level of positivity is good to keep you out of the Pits of Despair™, but this toxic level is not helpful.
Same here. Having thyroid cancer itself was a double whammy, not only did I have, you know, cancer, with all the medication side effects that entails, but it was also my thyroid, which means for several years I was living with a severely dysfunctional thyroid (as it took three years to get diagnosed as no doctor would take my seriously) but then, having my thyroid removed and now living on thyroid meds with the dose changes, fluctuations, etc trying to find a stable dose, brings a whole other set of illnesses and challenges. Especially since I have to be kept on an uncomfortably higher than usual level of thyroxine to prevent the cancer coming back (as a high thyroxine dose suppresses any cancer cells that got missed by the surgeries.) Despite all this, people kept treating me like a lazy hypochondriac when I had to drop out of university and quit working. It wasn’t until I finally had a stroke (caused by the cancer treatment) that has left me partially sighted and unable to walk properly, that most people finally accepted “OK, you are disabled after all, we’ll leave you in peace.” But even now a minority of people still treat me like a lazy hypochondriac, and they keep reassessing me over and over for benefits.
Ugh, yeah. Abled people can be so awful sometimes. I’m so sorry.