December 3, 2022

Heart Sofiron

Keep this treasure Safe

Getting to Know Our Social Health Network Members

3 min read

The new Social Health Network (SHN) supplies house to hook up with other patient leaders. In August, we posted numerous prompts to the Social Overall health Network Fb web page to act as springboards for comprehending 1 a different and forming connections. Neighborhood members had lots of insights to share!

How summertime heat influences them

One particular of the questions we requested was about surviving the summer months heat: “We’re owning never-ending summertime below on the east coastline of the United States. Does warmth have an affect on your wellbeing situation?” Overwhelmingly, the reaction was “yes!”

“Yes, pretty a great deal, primarily for my Lupus. Too hot can set off a flare, so I have to continue to be interesting.”

“Yes!!! My mast mobile condition does not allow for for terrific temp control. The heat raises my long-term dehydration and affects the wear time of my ostomy bag.”

“Heat only affects CLL (continual lymphocytic leukemia) people if they’re by now encountering ‘night sweats,’ which some have. Include on major of that incredibly hot flashes that some of us also have – and it’s like having a microwave on the inside!”

“I in fact do improved in warmer climate. The humidity is what will make issues hard for me.”

Their wellbeing journey in 3 text

Yet another August prompt requested about local community members’ well being journeys: “If you could explain your well being journey in 3 terms, what would they be?” A number of phrases came up continuously.


A lot of respondents selected “empowering” as one particular of their terms. They have discovered power in their wellbeing journey. Sharing and leading from disease presents them a voice and a new objective.

“Unusual – disabling – empowering!”

“Realizations, hope, empowerment.”

“Empowering, viewpoint, motivating.”

“Thriving, Empowerment, Hope.”

“Devastated, Prayer, Empowered.”


Yet another term a couple of individuals talked about was “humbling.” Residing with serious disease strips absent matters that most people consider for granted. Well being, straightforward motion, and performing daily duties may be demanding. But these challenges lead to classes that people in no way predicted.

“Unexpected, humbling, strengthening.”

“Definitely humbling.”

“A teaching minute.”


The concept of how hard it is to live with chronic health issues also arose. Folks specially pointed to discomfort, concern, and uncertainty.

“Confusing, distressing, mysterious.”

In the major, Unexciting, can be DEPRESSING, at times Frightening.”

“Learning, living, uncertainty.”

Their Connexion 2022 ordeals

August was also the month of the once-a-year Connexion assembly. This is a time to assemble, master from a single one more, and hear from Wellbeing Union management. One particular Fb prompt requested about ordeals at Connexion: “Thank you so much for attending day 2 of Connexion!! What has been your favored session so significantly? Have you figured out nearly anything new?”


Numerous responses shared an appreciation for networking options, especially the likelihood to network with other affected person leaders who are part of the SHN!

“I’m actually having fun with conference other affected person leaders, but session-wise I cherished understanding currently about networking.”

“The networking session was astounding. I can’t wait around to satisfy some new close friends tomorrow when we get to network once more.”

“I specially beloved assembly other affected person leaders in the networking session.”

Medical gaslighting

A different well-known session was just one on medical gaslighting. Recognizing that others are also dismissed and disregarded by medical professionals felt affirming to lots of people.

“So considerably . . . definitely today’s gaslighting session.”

“The gaslighting panel was excellent!”

“Today’s health care gaslighting panel. The discussion blew my head in a fantastic way.”

Thank you

We are grateful to individuals who engaged with these prompts! Thank you for staying in this article and for all the do the job you do!

Leave a Reply | Newsphere by AF themes.