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

376 views
37 times supported
25 comments

Courtney_J

Community manager

05/07/2021 at 00:00

Good advisor

Courtney_J

Community manager

Last activity on 13/10/2022 at 16:47

Joined in 2020

1,280 comments posted | 88 in the Good to know group

10 of their responses were helpful to members

Rewards

Good Advisor
Contributor
Messenger
Committed
Explorer
Evaluator

View profileView Add a friendAdd Write

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

All comments

Go to the last comment

Hippymum

24/11/2022 at 20:54

Good advisor

Hippymum

Last activity on 18/10/2023 at 18:52

Joined in 2016

94 comments posted | 7 in the Good to know group

7 of their responses were helpful to members

Rewards

Good Advisor
Contributor
Committed
Explorer
Evaluator

View profileView Add a friendAdd Write

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 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

Close all

See the responses

Yank34

Ambassador

26/11/2022 at 15:53

Good advisor

Yank34

Ambassador

Last activity on 19/11/2024 at 18:46

Joined in 2015

291 comments posted | 28 in the Good to know group

17 of their responses were helpful to members

Rewards

Good Advisor
Contributor
Committed
Explorer
Evaluator
Friend

View profileView Add a friendAdd Write

@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

See the signature

Ann

Hippymum

26/11/2022 at 22:10

Good advisor

Hippymum

Last activity on 18/10/2023 at 18:52

Joined in 2016

94 comments posted | 7 in the Good to know group

7 of their responses were helpful to members

Rewards

Good Advisor
Contributor
Committed
Explorer
Evaluator

View profileView Add a friendAdd Write

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

Hide the responses

JazzyC

Ambassador

27/11/2022 at 09:52

Good advisor

JazzyC

Ambassador

Last activity on 04/05/2024 at 07:55

Joined in 2016

293 comments posted | 55 in the Good to know group

13 of their responses were helpful to members

Rewards

Good Advisor
Contributor
Messenger
Committed
Explorer
Evaluator

View profileView Add a friendAdd Write

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

See the signature

Janet Collins

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

All comments

Give your opinion

What do you think about the Carenity Forum and community?

What are your expectations from Carenity and what would you like to see in the future?

Articles to discover...