Getting to Know Our Social Health Network Members

The new Social Health and fitness Community (SHN) offers room to join with other affected individual leaders. In August, we posted quite a few prompts to the Social Overall health Community Facebook page to act as springboards for understanding just one another and forming connections. Group associates had a lot of insights to share!

How summer time warmth has an effect on them

Just one of the issues we asked was about surviving the summer season warmth: “We’re having by no means-ending summer in this article on the east coast of the United States. Does heat have an effect on your health and fitness situation?” Overwhelmingly, the reaction was “yes!”

“Yes, quite much, particularly for my Lupus. Also sizzling can set off a flare, so I have to continue to be neat.”

“Yes!!! My mast mobile sickness doesn’t let for wonderful temp control. The heat increases my continual dehydration and has an effect on the dress in time of my ostomy bag.”

“Heat only influences CLL (serious lymphocytic leukemia) people if they’re presently suffering from ‘night sweats,’ which some have. Include on top rated of that very hot flashes that some of us also have – and it’s like obtaining a microwave on the inside of!”

“I really do greater in hotter weather conditions. The humidity is what would make factors challenging for me.”

Their well being journey in 3 text

A further August prompt asked about local community members’ overall health journeys: “If you could describe your overall health journey in 3 words and phrases, what would they be?” Numerous terms arrived up regularly.


Many respondents selected “empowering” as a single of their terms. They have observed power in their health and fitness journey. Sharing and foremost from ailment offers them a voice and a new intent.

“Unusual – disabling – empowering!”

“Realizations, hope, empowerment.”

“Empowering, point of view, motivating.”

“Thriving, Empowerment, Hope.”

“Devastated, Prayer, Empowered.”


A different word a several men and women talked about was “humbling.” Dwelling with persistent illness strips absent issues that most persons get for granted. Wellbeing, quick motion, and performing every day responsibilities might be difficult. But these difficulties guide to lessons that individuals never anticipated.

“Unexpected, humbling, strengthening.”

“Definitely humbling.”

“A training minute.”


The theme of how difficult it is to reside with continual illness also arose. People today specially pointed to agony, dread, and uncertainty.

“Confusing, agonizing, mysterious.”

In the key, Boring, can be DEPRESSING, at times Horrifying.”

“Learning, dwelling, uncertainty.”

Their Connexion 2022 encounters

August was also the thirty day period of the yearly Connexion assembly. This is a time to get, understand from a single a further, and hear from Health and fitness Union leadership. A single Facebook prompt asked about ordeals at Connexion: “Thank you so substantially for attending day 2 of Connexion!! What has been your preferred session so considerably? Have you acquired nearly anything new?”


A lot of responses shared an appreciation for networking prospects, specially the opportunity to network with other affected person leaders who are element of the SHN!

“I’m really making the most of assembly other affected individual leaders, but session-wise I cherished discovering currently about networking.”

“The networking session was incredible. I cannot wait around to satisfy some new friends tomorrow when we get to community once more.”

“I especially beloved assembly other patient leaders in the networking session.”

Clinical gaslighting

Another well known session was just one on professional medical gaslighting. Recognizing that other individuals are also dismissed and disregarded by health professionals felt affirming to lots of individuals.

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

“The gaslighting panel was great!”

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

Thank you

We are grateful to those people who engaged with these prompts! Thank you for getting below and for all the perform you do!

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