Getting to Know Our Social Health Network Members

The new Social Well being Community (SHN) gives room to join with other affected person leaders. In August, we posted quite a few prompts to the Social Wellness Network Facebook web site to act as springboards for comprehension 1 another and forming connections. Local community users experienced lots of insights to share!

How summer months heat has an effect on them

A single of the issues we requested was about surviving the summer time warmth: “We’re acquiring never-ending summer time here on the east coastline of the United States. Does warmth affect your wellness condition?” Overwhelmingly, the reaction was “yes!”

“Yes, extremely substantially, in particular for my Lupus. As well hot can bring about a flare, so I have to keep amazing.”

“Yes!!! My mast mobile illness doesn’t let for good temp regulate. The heat boosts my chronic dehydration and has an effect on the have on time of my ostomy bag.”

“Heat only affects CLL (continual lymphocytic leukemia) individuals if they’re presently dealing with ‘night sweats,’ which some have. Incorporate on prime of that sizzling flashes that some of us also have – and it’s like possessing a microwave on the within!”

“I truly do better in hotter temperature. The humidity is what makes things hard for me.”

Their wellness journey in 3 words and phrases

An additional August prompt requested about group members’ wellness journeys: “If you could describe your health and fitness journey in 3 words, what would they be?” Several phrases arrived up regularly.


Lots of respondents selected “empowering” as one of their terms. They have discovered power in their health and fitness journey. Sharing and major 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.”


A different phrase a couple individuals stated was “humbling.” Residing with chronic sickness strips absent matters that most people today choose for granted. Overall health, uncomplicated motion, and accomplishing daily tasks may well be demanding. But these issues guide to classes that folks never ever anticipated.

“Unexpected, humbling, strengthening.”

“Definitely humbling.”

“A training minute.”


The theme of how complicated it is to live with serious disease also arose. Men and women specially pointed to soreness, concern, and uncertainty.

“Confusing, unpleasant, mysterious.”

In the primary, Monotonous, can be DEPRESSING, sometimes Horrifying.”

“Learning, living, uncertainty.”

Their Connexion 2022 activities

August was also the thirty day period of the yearly Connexion meeting. This is a time to collect, master from one particular a further, and hear from Health and fitness Union management. One Facebook prompt questioned about activities at Connexion: “Thank you so significantly for attending day 2 of Connexion!! What has been your preferred session so much? Have you learned everything new?”


A lot of responses shared an appreciation for networking options, especially the likelihood to community with other patient leaders who are section of the SHN!

“I’m really savoring assembly other affected person leaders, but session-clever I loved mastering right now about networking.”

“The networking session was awesome. I can not wait around to fulfill some new close friends tomorrow when we get to community yet again.”

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

Clinical gaslighting

An additional well-liked session was 1 on health care gaslighting. Figuring out that others are also dismissed and ignored by medical professionals felt affirming to a lot of men and women.

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

“The gaslighting panel was excellent!”

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

Thank you

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

Jacqueline M. Faulkner

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