This is low grade science. Just a collection of comments that I have collected from social media. This should function as a primer for how to talk to people with Long Covid.
Things that people with Long Covid have reported that are helpful have a green background, and frequently heard unhelpful comments in red.
Is there anything I can do to help?
We are struggling, any help is highly appreciated.
Well it Could be Worse…..
Anything could be worse, there are fates worse than death, that doesn’t mean that death is ok.
Aren’t you Better Yet?
At the moment we are not sure if we will ever get better, many people are three years in. So saying things like this makes it feel never ending.
Listen to us
This is just good advice in general.
Our fatigue isn't the regular end of the day falling asleep in front of the TV type of fatigue. It is much worse.
We might seem fine at the time, but you probably only see us on our good days.
Have you tried
(insert remedy here)
Most things that people try won't work. This is espically true if you have no background in medicine.
Look on the Brightside
Bright side of what exactly?
Unfortunatley a positive mental attitude is tough, and doesn’t directly help LC symptoms.
We will cope without you.
We can’t do as much as before, we need a lot of time to rest, so you might have to cope without us and give us permission to duck out of obligations.
However, please don't forget about us, as it is easy to become socially isolated with LC. Especially as our lack of energy could be interpretted as a lack of effort, and that has a negative impact on all our friendships and relationships.
So please think about us and take our situation into account.
You had good day, you must better getting better
You didn’t see me on a bad days, when I couldn't leave the house, or maybe even get out of bed.
Cronic disease like LC is extremely variable, We have good days and bad, so one good day is great, but it doesn’t mean we are getting better.
You need to excercise more
Most LC people wish we could, we can’t. The Fatigue and Post excertional malasie are stopping us.
"You need to…" is mostly the same as “Have to Tried….” The things that do work are recorded in our treatments section.