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What are some of the most common misconceptions you hear about your condition?
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Hippymum
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Hippymum
Last activity on 18/10/2023 at 18:52
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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
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Yank34
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@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
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Hippymum
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@Yank34 thanks, I try to drop in and help whenever I'm well enough x
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JazzyC
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JazzyC
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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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Janet Collins
Somya.P
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Somya.P
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Hello everyone 🌟
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Misconceptions and false beliefs about chronic conditions can be frustrating 😕💬
💬 Do you hear things regularly about your condition that aren’t true? How do you usually react, and what would you like others to understand better?
Share your experiences and tips – your insights could really help the community feel understood 💛
Somya from the Carenity team 🌼
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Somya from the Carenity team 🌼
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Courtney_J
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Courtney_J
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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