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 Overall health Network (SHN) presents house to link with other patient leaders. In August, we posted several prompts to the Social Health Community Fb website page to act as springboards for knowledge one one more and forming connections. Group users experienced lots of insights to share!

How summer time warmth has an effect on them

Just one of the queries we asked was about surviving the summer months heat: “We’re acquiring hardly ever-ending summer season below on the east coastline of the United States. Does heat impact your wellness issue?” Overwhelmingly, the response was “yes!”

“Yes, pretty considerably, primarily for my Lupus. Way too hot can trigger a flare, so I have to keep amazing.”

“Yes!!! My mast mobile condition doesn’t allow for for fantastic temp manage. The warmth improves my persistent dehydration and has an effect on the wear time of my ostomy bag.”

“Heat only affects CLL (long-term lymphocytic leukemia) sufferers if they’re by now experiencing ‘night sweats,’ which some have. Include on top of that hot flashes that some of us also have – and it is like possessing a microwave on the within!”

“I actually do far better in hotter climate. The humidity is what tends to make points complicated for me.”

Their well being journey in 3 terms

An additional August prompt requested about community members’ wellbeing journeys: “If you could describe your well being journey in 3 text, what would they be?” Many words and phrases came up regularly.


Many respondents chose “empowering” as just one of their terms. They have located strength in their health journey. Sharing and main from ailment presents them a voice and a new intent.

“Unusual – disabling – empowering!”

“Realizations, hope, empowerment.”

“Empowering, standpoint, motivating.”

“Thriving, Empowerment, Hope.”

“Devastated, Prayer, Empowered.”


A different term a couple of people outlined was “humbling.” Dwelling with long-term ailment strips absent points that most persons acquire for granted. Health, easy motion, and performing day by day tasks could be tough. But these issues guide to classes that individuals under no circumstances expected.

“Unexpected, humbling, strengthening.”

“Definitely humbling.”

“A educating second.”


The theme of how tough it is to dwell with serious ailment also arose. Folks specially pointed to suffering, dread, and uncertainty.

“Confusing, painful, mysterious.”

In the most important, Tedious, can be DEPRESSING, from time to time Frightening.”

“Learning, residing, uncertainty.”

Their Connexion 2022 ordeals

August was also the month of the once-a-year Connexion assembly. This is a time to acquire, study from one another, and hear from Health Union management. One Facebook prompt questioned about ordeals at Connexion: “Thank you so a lot for attending working day 2 of Connexion!! What has been your most loved session so significantly? Have you uncovered anything new?”


Several responses shared an appreciation for networking alternatives, specially the probability to network with other affected individual leaders who are aspect of the SHN!

“I’m definitely taking pleasure in conference other affected individual leaders, but session-smart I beloved understanding today about networking.”

“The networking session was wonderful. I can’t wait to fulfill some new good friends tomorrow when we get to community again.”

“I especially beloved meeting other individual leaders in the networking session.”

Health care gaslighting

A different well-known session was one on professional medical gaslighting. Understanding that other folks are also dismissed and dismissed by medical professionals felt affirming to quite a few people today.

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

“The gaslighting panel was great!”

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

Thank you

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

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