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 Wellbeing Network (SHN) offers house to connect with other affected individual leaders. In August, we posted quite a few prompts to the Social Wellbeing Community Fb webpage to act as springboards for knowledge a single yet another and forming connections. Group associates experienced many insights to share!

How summer heat influences them

A person of the concerns we asked was about surviving the summer time heat: “We’re owning by no means-ending summertime right here on the east coast of the United States. Does heat affect your wellness condition?” Overwhelmingly, the reaction was “yes!”

“Yes, very considerably, particularly for my Lupus. Way too very hot can trigger a flare, so I have to keep neat.”

“Yes!!! My mast cell sickness does not permit for great temp management. The warmth increases my continual dehydration and influences the have on time of my ostomy bag.”

“Heat only influences CLL (persistent lymphocytic leukemia) clients if they are by now suffering from ‘night sweats,’ which some have. Add on leading of that scorching flashes that some of us also have – and it’s like acquiring a microwave on the inside of!”

“I really do much better in warmer weather. The humidity is what helps make items difficult for me.”

Their wellness journey in 3 words

An additional August prompt requested about neighborhood members’ wellness journeys: “If you could explain your wellbeing journey in 3 text, what would they be?” Quite a few words and phrases came up repeatedly.


Numerous respondents chose “empowering” as a single of their words. They have uncovered toughness in their well being journey. Sharing and leading from illness gives them a voice and a new intent.

“Unusual – disabling – empowering!”

“Realizations, hope, empowerment.”

“Empowering, perspective, motivating.”

“Thriving, Empowerment, Hope.”

“Devastated, Prayer, Empowered.”


One more word a several men and women outlined was “humbling.” Residing with long-term disease strips absent things that most folks choose for granted. Health and fitness, simple motion, and carrying out every day jobs may be complicated. But these difficulties guide to classes that people in no way envisioned.

“Unexpected, humbling, strengthening.”

“Definitely humbling.”

“A instructing instant.”


The concept of how tough it is to live with continual disease also arose. Folks especially pointed to discomfort, fear, and uncertainty.

“Confusing, agonizing, mysterious.”

In the key, Boring, can be DEPRESSING, in some cases Terrifying.”

“Learning, residing, uncertainty.”

Their Connexion 2022 experiences

August was also the month of the annual Connexion conference. This is a time to obtain, find out from a single one more, and hear from Health and fitness Union leadership. 1 Facebook prompt asked about experiences at Connexion: “Thank you so substantially for attending day 2 of Connexion!! What has been your favored session so significantly? Have you learned nearly anything new?”


Numerous responses shared an appreciation for networking alternatives, especially the possibility to network with other individual leaders who are element of the SHN!

“I’m actually having fun with conference other affected person leaders, but session-intelligent I beloved discovering now about networking.”

“The networking session was awesome. I simply cannot wait to meet up with some new buddies tomorrow when we get to network all over again.”

“I particularly beloved assembly other affected individual leaders in the networking session.”

Health care gaslighting

Another well-known session was 1 on health care gaslighting. Figuring out that other people are also dismissed and overlooked by medical doctors felt affirming to several folks.

“So much . . . absolutely today’s gaslighting session.”

“The gaslighting panel was wonderful!”

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

Thank you

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

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