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- What are some of the common misconceptions you hear about your condition?
What are some of the common misconceptions you hear about your condition?
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Hippymum
Good advisor
I have ME, one of the symptoms is exhaustion that doesn't improve with sleep. People always say "Oh I get tired too". I wish they could know that their tired is nowhere near the bone-crushing fatigue that knocks me out for three days at a time if I've not paced properly. I now just say that I have an energy limiting disease, that stops the tired comments.
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Yank34
AmbassadorGood advisor
@Hippymum Wow, what a great reply/answer you found re: having an "energy limiting disease" to anyone believing/stating they also "get tired"! I often think one can ever actually know what anyone is truly experiencing but I live in hope that more people start utilising more empathy in their interactions with everyone else. I've had MS since 1978 (although only formally diagnosed 9 years ago because I chose not to acknowledge this or seek any investigations) so perhaps that hugely increased my pre-existing empathy? Thanks so, so much for posting your inspired/insightful comment. This may be why I initially joined Carenity and continue to access it as/when I can because this 'community' is so supportive and always gives me hope for the future! Sending my love to everyone here and will continue to also be available as/when I may be helpful/be able to support all of you x
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Ann
Hippymum
Good advisor
@Yank34 thanks, I try to drop in and help whenever I'm well enough x
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JazzyC
AmbassadorGood advisor
I have secondary sarcoma lung cancer and if anyone else says didn't know you smoked, how long since you gave up I will scream. I have never smoked or ever had any desire to smoke
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Courtney_J
Community managerGood advisor
Hello everyone,
How are you today?
Are there any things, misconceptions or false beliefs that you hear regularly about your condition? If so, how do you react to them?
Feel free to share and exchange in the comments below!
Take care,
Courtney