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  • Social media and chronic illness: A double-edged sword? ๐Ÿ’ป๐Ÿ’ฌ
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Social media and chronic illness: A double-edged sword? ๐Ÿ’ป๐Ÿ’ฌ

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avatar Somya.P

Somya.P

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10/01/2025 at 11:35

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avatar Somya.P

Somya.P

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Last activity on 16/06/2025 at 16:04

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Hello everyone,

How are you today? ๐Ÿ˜Š

Social media has become a major source of information and support for people living with chronic illnesses. It can help connect you with communities, allow you to share your experiences, and make you feel less alone.

But itโ€™s not always positiveโ€”social media can also bring challenges, such as comparisons, misinformation, or added pressure.

๐Ÿ’ญ Whatโ€™s your experience?

  • Have you found online support groups or pages that have been helpful for managing your condition?
  • Have social media platforms ever had a negative impact on your well-being?
  • What do you think is the best way to use social media as a tool for support while avoiding its pitfalls?


Letโ€™s discuss and share our experiences together!

๐ŸŒŸ Looking forward to hearing your thoughts,
Somya from the Carenity team ๐ŸŒผ


@pollyj4 @lar123 @robjmckinney @cooperman @Pinky58 @LynneC @Junej6 @fernster @jamesm @tinaann @Razor690 @jumping @millerkaren @Tigger.co.uk @happylad1970 @smokitcat @annafielding @marshy2503 @emc1cle @Mandy59 @bigroscoe @VICKICOFFEY @Mikejohn @lesmal @paulg54 @Sharon9 @redders01 @NannieAnn @Folioc @Allymal @Germantara @Somya.P @LifeDelineator @Flip5ter @RonTock @SP3RDN4 @elvinsmithย 

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avatar Flip5ter

Flip5ter

10/01/2025 at 12:15

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avatar Flip5ter

Flip5ter

Last activity on 11/06/2025 at 19:37

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My FB support group COPD REHAB GUY seems to be well received, I only promote active lifestyles within sufferers capabilities, any COPD health aspects or queries are handled by knowledgeable associated groups


Social media and chronic illness: A double-edged sword? ๐Ÿ’ป๐Ÿ’ฌ https://www.carenity.co.uk/forum/other-discussions/good-to-know/social-media-and-chronic-illness-a-doubleedged-5561 2025-01-10 12:15:38

avatar LifeDelineator

LifeDelineator

10/01/2025 at 13:51

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avatar LifeDelineator

LifeDelineator

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Just as Volaire said: "If God did not exist, it would be necessary to inventย him.", our lack of citizenship requires a place for our "wretched refuge" to land; and, social media is exactly that.


Social media and chronic illness: A double-edged sword? ๐Ÿ’ป๐Ÿ’ฌ https://www.carenity.co.uk/forum/other-discussions/good-to-know/social-media-and-chronic-illness-a-doubleedged-5561 2025-01-10 13:51:30

avatar LifeDelineator

LifeDelineator

Edited on 13/01/2025 at 13:20

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avatar LifeDelineator

LifeDelineator

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Just as Volaire said: "If God did not exist, it would be necessary to inventย him.", our lack of citizenship requires a place for our "wretched refuge" to land; and, social media is exactly that.


Social media and chronic illness: A double-edged sword? ๐Ÿ’ป๐Ÿ’ฌ https://www.carenity.co.uk/forum/other-discussions/good-to-know/social-media-and-chronic-illness-a-doubleedged-5561 2025-01-10 13:51:32

avatar Mikejohn

Mikejohn

10/01/2025 at 14:35

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avatar Mikejohn

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Yes itโ€™s full of information but unfortunately one has to b very careful as a lot of misinformation on there and people can b tricked into buying mracale cures which are no good

See the signature

Mike


Social media and chronic illness: A double-edged sword? ๐Ÿ’ป๐Ÿ’ฌ https://www.carenity.co.uk/forum/other-discussions/good-to-know/social-media-and-chronic-illness-a-doubleedged-5561 2025-01-10 14:35:27

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avatar Flip5ter

Flip5ter

11/01/2025 at 09:25

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avatar Flip5ter

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Last activity on 11/06/2025 at 19:37

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@Mikejohn I am very strict in regulating my group, I have a qualified medical professionals and knowledgeable people on associated groups, anybody that mentions a book, herbal cure , gadget, video, course the comment is removed and the member is removed and banned. I only deal with promoting an active lifestyle I make it quite clear that I have no medical/sports science qualifications and that if people are concerned they should check with their doctor before carrying out any activity.


Social media and chronic illness: A double-edged sword? ๐Ÿ’ป๐Ÿ’ฌ https://www.carenity.co.uk/forum/other-discussions/good-to-know/social-media-and-chronic-illness-a-doubleedged-5561 2025-01-11 09:25:42

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avatar happylad1970

happylad1970

10/01/2025 at 17:39

avatar happylad1970

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I have contacts on Facebook who, don't understand the critical nature of my disabilities (diabetes,, autism dyspraxia, depression generalised anxiety disorder learning difficulties)

I think social media has made my disabilities comparable worse

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Johnny Baker


Social media and chronic illness: A double-edged sword? ๐Ÿ’ป๐Ÿ’ฌ https://www.carenity.co.uk/forum/other-discussions/good-to-know/social-media-and-chronic-illness-a-doubleedged-5561 2025-01-10 17:39:51

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avatar LifeDelineator

LifeDelineator

11/01/2025 at 11:53

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@happylad1970 - Even though you used the word twice, I noticed you do not have single disability.

You are correct. White guilt, bubble-wrapping, has made it [ comparable worse ]; and you have embraced it both willingly and completely.


See the signatureย 




Social media and chronic illness: A double-edged sword? ๐Ÿ’ป๐Ÿ’ฌ https://www.carenity.co.uk/forum/other-discussions/good-to-know/social-media-and-chronic-illness-a-doubleedged-5561 2025-01-11 11:53:41

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avatar robjmckinney

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10/01/2025 at 18:39

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While I closed my Facebook account some years ago due to their political leanings and censorship. The bonus was with social services, who examine you Facebook profile to gain insight to your personnal life and opinions, not having an account prevented such intrusions. I do use my wife's account to access some good sites occasionally and have proved quite useful. I use Youtube mostly to access various subjects, while still biased not as extreme as Facebook. Clearly many medical sites have a Facebook account so clearly to access these organisations an account is necessary.

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robjmckinney


Social media and chronic illness: A double-edged sword? ๐Ÿ’ป๐Ÿ’ฌ https://www.carenity.co.uk/forum/other-discussions/good-to-know/social-media-and-chronic-illness-a-doubleedged-5561 2025-01-10 18:39:22

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avatar LifeDelineator

LifeDelineator

11/01/2025 at 11:58

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avatar LifeDelineator

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@robjmckinney - So, like Thoreau, your, electronic, Walden Pond is still within walking distance, of a railroad track?


Social media and chronic illness: A double-edged sword? ๐Ÿ’ป๐Ÿ’ฌ https://www.carenity.co.uk/forum/other-discussions/good-to-know/social-media-and-chronic-illness-a-doubleedged-5561 2025-01-11 11:58:36

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avatar Flip5ter

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12/01/2025 at 12:14

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The concept of Carenity is great, but it epitomises the fragmented nature of information regarding serious ailments/diseases. Navigation is not simple and identifying individual threads is difficult.
that is why I chose a more simple approach, where I promote active lifestyles, no highlighting adverse effects of COPD or asking questions about it, no other diseases (even though COPD is an umbrella term) no social posts, greetings or blessings, no promotions, spam, herbal remedies etc. but attached to the group I have 2 excellent groups, associated with mine that have expert knowledge, no searching endlessly through posts to find a pointless answer.
there is a need for a central resource that is specific to certain conditions that can be easily accessed.


Social media and chronic illness: A double-edged sword? ๐Ÿ’ป๐Ÿ’ฌ https://www.carenity.co.uk/forum/other-discussions/good-to-know/social-media-and-chronic-illness-a-doubleedged-5561 2025-01-12 12:14:23

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avatar Mikejohn

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12/01/2025 at 22:00

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@Flip5ter is it on Facebook

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Mike


Social media and chronic illness: A double-edged sword? ๐Ÿ’ป๐Ÿ’ฌ https://www.carenity.co.uk/forum/other-discussions/good-to-know/social-media-and-chronic-illness-a-doubleedged-5561 2025-01-12 22:00:09

avatar Flip5ter

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12/01/2025 at 22:08

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@Mikejohn https://m.facebook.com/groups/3313170608944402/?ref=share

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Facebook


Social media and chronic illness: A double-edged sword? ๐Ÿ’ป๐Ÿ’ฌ https://www.carenity.co.uk/forum/other-discussions/good-to-know/social-media-and-chronic-illness-a-doubleedged-5561 2025-01-12 22:08:40

avatar LifeDelineator

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13/01/2025 at 13:24

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@Mikejohn - If advice meant anything, some government program would already be charging you for it.


Social media and chronic illness: A double-edged sword? ๐Ÿ’ป๐Ÿ’ฌ https://www.carenity.co.uk/forum/other-discussions/good-to-know/social-media-and-chronic-illness-a-doubleedged-5561 2025-01-13 13:24:58

avatar Mikejohn

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13/01/2025 at 18:25

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@LifeDelineator true

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Mike


Social media and chronic illness: A double-edged sword? ๐Ÿ’ป๐Ÿ’ฌ https://www.carenity.co.uk/forum/other-discussions/good-to-know/social-media-and-chronic-illness-a-doubleedged-5561 2025-01-13 18:25:16

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