What are some of the most common misconceptions you hear about your condition?

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Courtney_J

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05/07/2021 at 00:00

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Courtney_J

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Hello everyone,

How are you today? emoticon cute

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

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Hippymum

24/11/2022 at 20:54

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Hippymum

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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.

What are some of the most common misconceptions you hear about your condition? https://www.carenity.co.uk/forum/other-discussions/good-to-know/what-are-some-of-the-common-misconceptions-you-hear-about-your-condition-4227 2022-11-24 20:54:48

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Yank34

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26/11/2022 at 15:53

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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

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26/11/2022 at 22:10

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@Yank34 thanks, I try to drop in and help whenever I'm well enough x

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JazzyC

27/11/2022 at 09:52

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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

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23/12/2025 at 10:53

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Somya.P

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Hello everyone 🌟

@lounic3 @Franklin @gianni @Minnie @twiggy @CoCo1300 @Annh1962 @leosmummy @Sharon57 @maryanne @sommersalt @hondachris @ally123 @mikebpool @moogie @shelly3838 @cairns @Samali @P!nksLove4Ever @Mundevvu @SAMIDX @idrilr @susiep @gillyvi @DanielTRead @robjmckinney @Christabel @hoppa1950 @bernie1 @laurence jones @AngelaP63 @Coggs21 @leeza774 @iocounty72 @Merlin @tootsy29 @Lynnie123 @leslie66 @Topcat1967 @chieftainwull @Rosiebee @B3thy1963 @Daviduk @Rhinos @tonysmol @oscar2012 @kellylebelly @Jochan @adamskiboy @Jojo73 @clinical @paulkj @normanringrose @andrea55 @Darukswoman @mrd123 @gina66 @K8T96X @weedougie @JFraser @peepeebedee @Collins @Shopaholic @HSDEMON @Seamus200 @Barbarapotter @sian&chris2410* @lizdivers @Twin07 @Blomberg @Lylabow123 @MinnaO @Jules2012 @neilb65 @2bob1969 @Sunderland1941 @Hannie @Weereds @Pailine5968 @Scappaticci1234 @ConstanciaLameckLima @Susie39 @Karenrounce @Davidwillets @Harrogate26 @eileengreen @winifred41009 @Jacqueline22 @Lizb24 @Stoneham @Jlt1973 @JohnFrench @Linda21 @Deedoom @mainstalk @lauren.taylor @Smithypost @Willow80 @susieliz @FTHealth

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 🌼

YorkshireJayne

11/04/2026 at 09:37

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"Oh yes, I have a bad back" or "Oh yes I know just what you mean" when I say I have spinal problems.

When I say I have autoimmune issues and a cancer related to them, I get strange looks and asked what I mean by that. Then follows all kinds of advice about how to prevent the inflammatory pain that goes with autoimmune and asked why I haven't had treatment for the cancer.

Then rumours get spread about me that I'm making up the problems that I have because I lead a "normal" life...what they don't see is me crying in pain, unable to move or sleep!

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Life is for living, do it, no matter what!

What are some of the most common misconceptions you hear about your condition?

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