Social media and chronic illness: A double-edged sword? 💻💬

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1Deygoothoan

10/01/2025 at 11:35

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1Deygoothoan

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Hello everyone,

How are you today? 😊

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 it’s not always positive—social media can also bring challenges, such as comparisons, misinformation, or added pressure.

💭 What’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?

Let’s discuss and share our experiences together!

🌟 Looking forward to hearing your thoughts,
Somya from the Carenity team 🌼

@Yawaygreang34 @Frikobreadayt7823 @Loudriplu7309 @Moobrays24 @Treadror5 @Joobres1 @901Chimoshait @Plapealou134 @Shopliblock13 @Yeaceypleen49 @Rigruhash7656 @Proodaifleyt1 @5959Thochoasaybeyt @Raipreecleeck51 @Toofrung170 @Jeakus365 @Laichack9125 @3Triyeegeas @Thaydajair6 @Thoonout9 @Stayfeecheaglayt81 @Vuronayploush99 @1Wosteyjear @Wayweash8762 @43Driclousour @Bridge15 @18Crifleagling @Doacais549 @Rebleycayng65 @Craigroush742 @Feesteegrung7 @1Deygoothoan @Troubon409 @07Preekeeblel @Blaiteesaiprain84 @6Deegayyeer @2Vejishal

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07Preekeeblel

10/01/2025 at 12:15

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07Preekeeblel

Last activity on 30/06/2025 at 10:26

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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? 💻💬 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

Troubon409

10/01/2025 at 13:51

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Troubon409

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

Troubon409

Edited on 13/01/2025 at 13:20

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Troubon409

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

1Wosteyjear

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10/01/2025 at 14:35

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1Wosteyjear

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Yes it’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

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Michael keane

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07Preekeeblel

11/01/2025 at 09:25

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07Preekeeblel

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@1Wosteyjear 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.

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Toofrung170

10/01/2025 at 17:39

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Toofrung170

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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

Loudriplu7309

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10/01/2025 at 18:39

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Loudriplu7309

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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

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Troubon409

11/01/2025 at 11:58

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Troubon409

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@Loudriplu7309 - So, like Thoreau, your, electronic, Walden Pond is still within walking distance, of a railroad track?

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07Preekeeblel

12/01/2025 at 12:14

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07Preekeeblel

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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.

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1Wosteyjear

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12/01/2025 at 22:00

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1Wosteyjear

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@07Preekeeblel is it on Facebook

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Michael keane

07Preekeeblel

12/01/2025 at 22:08

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07Preekeeblel

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@1Wosteyjear https://m.facebook.com/groups/3313170608944402/?ref=share

Facebook

Troubon409

13/01/2025 at 13:24

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Troubon409

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@1Wosteyjear - If advice meant anything, some government program would already be charging you for it.

1Wosteyjear

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13/01/2025 at 18:25

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1Wosteyjear

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@Troubon409 true

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Michael keane

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Wayweash8762

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06/07/2025 at 14:19

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Wayweash8762

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I use Facebook for epilepsy awareness and admin epilepsy groups. I run an awareness page for the community only.

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Les

Graflatais475

09/02/2026 at 07:07

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Graflatais475

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Are you social media only a little It's never been a big thing for me. I mostly use it to keep up to date with my family. To make me laugh smile (Facebook Simon's cat).

I gave up a long time ago following what I thought were people who wanted to be supported and to support others. It turned out I was too positive!

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Karen

Social media and chronic illness: A double-edged sword? 💻💬

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