April 19, 2024


Health know-how

Getting to Know Our Social Health Network Members

several mouths with speech bubbles show a sun, scribbled words, and a network of people

The new Social Health and fitness Community (SHN) supplies room to join with other affected person leaders. In August, we posted several prompts to the Social Overall health Community Facebook web page to act as springboards for understanding one particular an additional and forming connections. Group customers experienced several insights to share!

How summer season warmth impacts them

1 of the thoughts we asked was about surviving the summer heat: “We’re acquiring never-ending summer here on the east coastline of the United States. Does heat have an affect on your well being situation?” Overwhelmingly, the reaction was “yes!”

“Yes, really considerably, specifically for my Lupus. As well hot can induce a flare, so I have to stay neat.”

“Yes!!! My mast mobile disorder doesn’t permit for fantastic temp management. The heat increases my continual dehydration and affects the dress in time of my ostomy bag.”

“Heat only has an effect on CLL (serious lymphocytic leukemia) individuals if they’re already encountering ‘night sweats,’ which some have. Include on leading of that sizzling flashes that some of us also have – and it’s like owning a microwave on the inside!”

“I in fact do better in hotter temperature. The humidity is what will make issues hard for me.”

Their wellness journey in 3 words

An additional August prompt questioned about group members’ health journeys: “If you could explain your health and fitness journey in 3 phrases, what would they be?” Various phrases came up consistently.


Several respondents chose “empowering” as 1 of their words. They have discovered power in their health and fitness journey. Sharing and foremost from illness presents them a voice and a new reason.

“Unusual – disabling – empowering!”

“Realizations, hope, empowerment.”

“Empowering, perspective, motivating.”

“Thriving, Empowerment, Hope.”

“Devastated, Prayer, Empowered.”


A further word a handful of people today outlined was “humbling.” Residing with continual sickness strips absent matters that most persons just take for granted. Wellness, quick motion, and doing every day duties may be challenging. But these difficulties direct to classes that individuals hardly ever anticipated.

“Unexpected, humbling, strengthening.”

“Definitely humbling.”

“A instructing minute.”


The topic of how tough it is to dwell with serious illness also arose. People today specifically pointed to discomfort, worry, and uncertainty.

“Confusing, agonizing, mysterious.”

In the primary, Boring, can be DEPRESSING, in some cases Horrifying.”

“Learning, living, uncertainty.”

Their Connexion 2022 experiences

August was also the month of the yearly Connexion meeting. This is a time to get, learn from just one an additional, and listen to from Overall health Union leadership. One particular Fb prompt asked about encounters at Connexion: “Thank you so substantially for attending working day 2 of Connexion!! What has been your favored session so significantly? Have you uncovered anything new?”


Several responses shared an appreciation for networking opportunities, specially the opportunity to network with other individual leaders who are portion of the SHN!

“I’m seriously savoring meeting other client leaders, but session-sensible I cherished learning today about networking.”

“The networking session was remarkable. I just cannot hold out to fulfill some new friends tomorrow when we get to community yet again.”

“I specially loved assembly other affected individual leaders in the networking session.”

Health care gaslighting

A further well known session was one on clinical gaslighting. Understanding that other individuals are also dismissed and disregarded by doctors felt affirming to a lot of persons.

“So far . . . surely today’s gaslighting session.”

“The gaslighting panel was fantastic!”

“Today’s medical gaslighting panel. The discussion blew my thoughts in a fantastic way.”

Thank you

We are grateful to all those who engaged with these prompts! Thank you for staying here and for all the do the job you do!