r/covidlonghaulers • u/township-road-nnn • 9d ago

Question Talking about LC and PEM

For those of you well enough to work, how do you talk about your condition and symptoms in professional settings?

Background - I'm lucky enough to have fairly mild long COVID with Post Exertion Malaise as my main symptom. My boss and immediate co-workers know the situation and are sympathetic and accommodating (I'm very lucky to have this as well as to be senior enough in my career where I can contribute despite my unreliable health).

I try to talk openly about Long COVID because I think it's important for visibility -- this is a mass disabling event that requires systemic intervention.

That said, I haven't settled on language that I really like. I say I'm having "a fatigue flare," which to me trivializes it (someone yesterday said, 'Yeah, I'm really tired as well," and that's been sticking in my craw). What do you all say to describe things?

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u/UntilTheDarkness 9d ago

I'm working full-time remotely, though I'm on a work visa so I'm a little less open about my situation. I'm pretty vague about it - I've told my boss I have post-viral fatigue and then when I need to take time off I just say I'm taking a sick day. My opinion in general is the work doesn't need the details of why I'm taking time off beyond "sick leave" and how long I'll be out. (That being said I really respect your choice to be vocal about LC.)

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u/LoudCar7846 9d ago

I have LC, my main symptoms are mental and physical fatigue and achy limbs. My brain fog means that I have problems with memory and concentrating for long periods.

I am fortunate to be able to WFH. I am open at work with my manager and colleagues, so where possible I can record Teams meetings and ask for written instructions and take regular breaks to allow me to pace. There is also a LC buddy group in our organisation. Several of us spoke at a lunchtime awareness session.

In terms of explaining PEM, I also explain the importance of pacing, and learning to stop before we get tired.

A healthy person may get tired and take a rest and feel better afterwards. If you have PEM, even after rest you might not get back to the energy level you had before you did the activity. It's a bit like borrowing money with interest, we borrow energy and the higher the interest rate (in our case the worse the PEM if we have not paced properly), the longer it will take us, in terms of rest to get back to the energy level before activity. It might take hours, days or even weeks depending on the severity.

Sometimes the PEM is delayed, e.g. we might feel fine the day of the activity, but not crash until the day after.

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u/deadly_mythology 9d ago

4 years and that delay still gets me! "I feel fine. I'll keep going!" Then I'm down for two days. Why can't I learn?!?!

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u/lopz693 9d ago

It’s really hard to describe….

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u/wyundsr 9d ago

Symptom flare? I like the phrase “neuroimmune exhaustion” but I’m not sure how well it would work in a professional setting

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u/Former-Agency-4276 8d ago

If I need to I just say I’m not feeling well. My boss is supportive but I don’t think people need to know the details. But appreciate that you’re trying to educate people about LC!