95 posts tagged “community”

Creating communities, on and off PatientsLikeMe

Posted November 28th, 2017 by

More than half a million members, connecting 365 days a year, sharing countless health insights and words of support. Communities like this one are built on communication. And every day, patients like you are finding new ways to connect and enrich your community.

From in-person meet-ups to live-streaming support groups and off topic threads, patients like you are finding creative ways to build communities. Check out some of the ways connections are growing in and out of the forum.

Taking it offline

What started as a simple chat between friends in the forum evolved into something much bigger. Members from the multiple myeloma community on PatientsLikeMe decided to take their friendship out of the forums and into real life. Marcia (marcia_holman), Dennis (DennisIvan), Paul (paulatsea) and Lee (Dapylil), along with spouses and grandchildren, got together and discussed life with multiple myeloma, their “new normal” and shared the highs and lows of the journey together.

In Marcia’s words: “It has been a delight to get together and meet someone you have just been corresponding with on line. We can put a face to them. You get to know their personalities and they become “forever friends!” Check out the full story.

 

Connecting to transform lives

When Nola, living with progressive MS, was having trouble making her bathroom handicap accessible, Gary decided to jump in and help. He used his connections at Home Depot (where he worked) to help Nola regain her independence, her ability to clean herself, and most importantly, her dignity. Check out photos of her remodeled, handicap accessible bathroom and rest of their story on the blog.

 

Meeting members where they are

Earlier this year, John started a Facebook group to live-stream pulmonary fibrosis (PF) support group meetings and conferences. His hope is that the group “can help with the feelings of isolation and loneliness, plus provide valuable information and hope for the future.”

Unwinding in off-topic threads

Members use off-topic threads to play games, celebrate life and each other, and to take a break from the stress of living with a chronic illness. Here’s a few popular threads:

  • A thread to celebrate us! Going strong since 2010, this thread was created as a “happy place” for MS members looking for positivity and support.
  • In the Parkinson’s disease forum, members have swapped lots of jokes and pics of their artwork for almost a decade.
  • Members of the mental health community have kept their “Three word story” thread going strong for seven years, and shared their “Goals for today” with each other for even longer.
  • Potpourri” and reading recommendation threads in the ALS forum have been go-to places to share about non-ALS stuff.

Are you part of the PatientsLikeMe community? Join to add your voice and create your own community.

 

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75k [virtual] hugs on PatientsLikeMe – and how social connections are good for your health

Posted August 22nd, 2017 by

Newsflash: “Social Interaction Is Critical for Mental and Physical Health,” as The New York Times recently reported. Decades of research support the theory that social connections can have a positive effect on your health. Having social ties may help prevent illness and is still a boon to your health when you’re sick or living with a health condition. Check out some of the research and see how members are supporting each other socially on PatientsLikeMe.

What’s the science behind social connections?

As the Times reports, a 2001 study found that people with coronary artery disease who’ve had a heart attack have a lower risk of another cardiac arrest if they’re more socially connected. Other studies have shown that social interactions and support may help with everything from wound healing and physical pain to mood and psychological symptoms.

Researchers who’ve studied the benefits of social interactions for women with breast cancer have found that receiving social-emotional support may reduce stress and affect the body’s “HPA” axis (or hypothalamic-pituitary-adrenal axis – that’s a mouthful). Basically, the HPA axis uses glands, hormones and nerves to help regulate several processes in the body: stress response, immune and digestive systems, mood and emotions, sexuality and energy storage.

Studies show that “instrumental support” (like in-person assistance with getting to appointments and taking medications) is helpful to people with health conditions, but some researchers say that “social-emotional support” (connecting face-to-face or online) is critical in disease management. Another New York Times article notes that long-distance friendships are beneficial, and “in many studies, friendship has an even greater effect on health than a spouse or family member.”

Here for each other – on PatientsLikeMe

Many PatientsLikeMe members arrived here because of their diagnosis – but they’re discussing more than their health on the site. Many build a virtual network of comrades with whom they chat or check in about their weekends, birthdays, holidays, hobbies and more. For some people, having a health condition may make it harder to get out and socialize face-to-face, and for others, an in-person network of “normals” (people without health issues) doesn’t always get it.

Here are some stats about non–health-related exchanges on PatientsLikeMe:

  • 8,372 “happy birthday” posts
  • 8,209 “here for you” posts
  • 4,921 “happy for you” posts
  • 3,144 “Merry Christmas” + 950 “Happy Holidays” posts
  • 6,126 “this weekend” + 570 “your weekend” posts
  • 2,254 “how are you doing?” + 1,256 “how are you feeling?” posts
  • 2,229 “I hear you” posts
  • 866 “made my day” posts
  • And, finally… 75,553 “hugs”

Let’s talk (OT)!  

Just to name a few “off topic” (“OT”) discussions on PatientsLikeMe…

  • In the Parkinson’s disease forum, members have swapped lots of jokes and pics of their artwork for almost a decade.
  • In the MS forum, members play “Ask the next person a question” and all sorts of word games.
  • Members of the mental health community have kept their “Three word story” thread going strong for seven years, and shared their “Goals for today” with each other for even longer.
  • “Potpourri” and family photos threads in the ALS forum have been go-to places to share about non-ALS stuff.

What would you like to chat about? Join the community today and click the green button to “Start a new topic” like the ones above (or whatever you can think of!).

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