92 posts tagged “community”

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!).

Share this post on Twitter and help spread the word.


“Everyone needs a “Me too!” moment” – Member Shannon on exposing her truth

Posted July 17th, 2017 by

“With every part of me that becomes less than what it used to be, a different part of me usually becomes more than what it used to be. In fact, maybe that’s the point, but it doesn’t make it any less difficult.”

Shannon (Sna2164) is a wife, mother, animal lover and writer, living in southern California. She was officially diagnosed with multiple sclerosis at 27 years old, with three children under the age of four. In a recent interview, Shannon told us about her diagnosis, starting a blog and her journey to peace and contentment with MS.

Check out her story about exposing her truth and helping others who feel misunderstood.

Searching for answers

While others can go through years of suffering while waiting for a diagnosis, Shannon’s experience was comparatively quick. It started six months after her youngest daughter was born. She began having terrible pain in her right eye, combined with temporary loss of vision in that same eye anytime she went from darkness to light or vice versa. In her quest for an explanation and solution, she used eye glasses she didn’t need and took antibiotics for sinus infections she didn’t have.

A few months into trying to solve the mystery of her eye pain, she rapidly began experiencing other symptoms including numbness, tingling, and Lhermitte’s sign (a burst of pain that runs down the back, arms and legs when the neck moves). As if slowly going numb from the feet up by inches every day wasn’t enough to alert her primary care doctor that she needed a specialist, one night she got up out of bed in the middle of the night to go to the bathroom and hit the floor. She tried again, and hit the floor again. This temporary paralysis subsided within minutes, but it alarmed her primary care physician enough to insist she see a neurologist right away.

Shannon saw a neurologist for the first time in August 2004 and was officially diagnosed with multiple sclerosis (MS) in October 2004 after an MRI of her brain and cervical spine revealed multiple lesions. She was 27 with three small children and had just been diagnosed with a condition she knew nothing about.

Finding strength through words

Starting her blog, diaryofadisease in 2015 was both a terrifying and freeing decision that Shannon says was the best decision she ever made. She’d been writing about her experience living with disease over the years and wanted to find a way to share it with others.

“I asked myself if creating a blog was really something I wanted to do, would I have regrets about not doing it, simply out of fear, in twenty years? And the answer was yes, so I forced myself to do it despite my long list of reasons I felt afraid and inadequate.”

Many months later, her dream became a reality. While there were many times she wanted to give up, her son stepped in and helped complete her vision for the site.

“He also took the photo on the home page which was anything but candid. I told him I felt like I was standing still in a world that was passing me by, and since he already was quite the photographer, he knew just how to capture my feelings in this photo that speaks volumes.”

When she released her blog, even those close to her knew very little about her struggles living with disease because it was, and still is, very challenging to talk about. Despite her fears, she knew it was important to be honest about her health and experience with MS. She also felt like there wasn’t enough information online that spoke to the heart about living with disease.

“There are volumes of information about MS and disease that speak to the brain about the scientific ‘ins and outs’, but nothing on how darn hard it is to suffer the symptoms. Everyone needs validation for their feelings, everyone needs a ‘Me too!’ moment.”

Although Shannon started her “diary of a disease” as a way to cope, she hopes that it’ll help others who feel equally as lost and misunderstood in their journey of disease.

“One of the greatest rewards is that in surrendering my pride and exposing my truth, my burden is much lighter, and the people who love me in my life have a means to really understand me in a way I could never communicate verbally.”

 

Adjusting to a new normal

Shannon’s new normal with MS looks and feels very different than what she thought normal meant before. As she moves forward, she’s learning that there are many definitions of normal and that it is okay to have limitations, to live against the norm, to change the way she does things, admit her weaknesses and slow down.

Shannon’s goal is acceptance and contentment. It isn’t always easy. Since living with MS means that each day can look different, the journey to acceptance and contentment needs to happen not once, but again and again. The principle she attempts to follow daily is:

“My value is in who I am and not in what I do, because I have spent too many years drowning in the ‘do better try harder’ mindset, and true peace isn’t found there, and I think that’s what most of us long for.”

Share this post on Twitter and help spread the word.