This Sucks

The top 10 things it really sucks to hear when you have ME/CFS - An educational tool for friends and family.



10.  "What is that?  A sleep disorder?  Like Narcolepsy?"
No.  Just ... no.    And the person who said this knows who they are :P

9.  "When are you going back to work?"
Being too sick to work and not knowing if you can ever go back is not a good feeling, and the thing that really kills you is the uncertainty.  Repeatedly having to answer this question with "I don't know" is a bit frustrating.



8.  "You just need to eat healthier.  I always feel sluggish if I don't eat veggies."
Most people with CFS have food sensitivities and watch what they eat pretty carefully.  Chances are pretty good they already eat better than you.

7.  "You should try this pill/fruit/vitamin/meditation technique/religion/herbal remedy that  I found on Google/saw on TV/read about in Woman's Day/had recommended by a friend of a pet of a doctor."
Everyone and his dog are out there marketing "cures" for CFS.  They're generally expensive and usually designed for people who are a bit run down rather than chronically ill.  You're not a doctor and neither is the person selling that product.  Let the person with CFS manage their own treatment.


6.  When 7 is followed up with "Well, no wonder you're still sick if you won't even try to get better."
Most people with CFS will be trying, if not one, then a number of things to improve their health.    Just because they're not trying the, likely unhelpful, thing you suggested, doesn't mean they don't want to get better.  Also remember that trying "cure" after "cure" with no successful results can be exhausting after a few years, and if a person with ME/CFS has decided to take a break from it, it's probably because they need to.

5.  "You'd feel better if you just did more exercise. "
Actually, a lot of doctors tell you to pace yourself with CFS.  Doing too much generally results in "payback", i.e. collapsing from exhaustion about 24 hours after doing the exercise.

Consistently doing too much gradually lowers your threshold until things like breathing and digestion start to take it out of you.


4.  "Lazy!"
I once had a housemate cry this when I announced I was waiting for  Mum to visit so she could drive me to the shops (rather than walking).  Granted it was early on in the illness and I didn't have a diagnosis yet, but it hurt, and it certainly wasn't the last time I heard it.

People with ME/CFS use their energy up a lot faster than healthy people and everything we do takes a lot more effort.  We work ourselves to exhaustion pretty much every day.  How many people can claim that?


3.  "Chronic Fatigue Syndrome - is that even a real thing?"
Yes!


2.  "Yeah, I feel tired sometimes too."
Don't compare your dripping tap to my flooding house and pretend like you can relate.  You're not finding common ground and comments like this just make people with ME/CFS feel like you're dismissing a very serious illness as something that everyone experiences from time to time.  You wouldn't tell a cancer patient you understand what chemo feels like because sometimes you find hair in your brush.


1.  "But you don't look sick."
There is a whole website devoted to this one and you can check it out here.
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