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 Community (SHN) provides house to connect with other affected individual leaders. In August, we posted numerous prompts to the Social Health and fitness Network Fb site to act as springboards for comprehending a single an additional and forming connections. Group users had quite a few insights to share!

How summer season warmth has an effect on them

1 of the issues we requested was about surviving the summer months heat: “We’re possessing never ever-ending summertime right here on the east coast of the United States. Does warmth impact your health and fitness ailment?” Overwhelmingly, the reaction was “yes!”

“Yes, incredibly substantially, specifically for my Lupus. Too hot can cause a flare, so I have to continue to be neat.”

“Yes!!! My mast mobile sickness does not permit for good temp handle. The heat improves my long-term dehydration and has an effect on the have on time of my ostomy bag.”

“Heat only influences CLL (continual lymphocytic leukemia) individuals if they are previously dealing with ‘night sweats,’ which some have. Add on top rated of that warm flashes that some of us also have – and it is like having a microwave on the inside!”

“I in fact do better in warmer weather. The humidity is what makes issues complicated for me.”

Their wellness journey in 3 text

Yet another August prompt asked about community members’ health and fitness journeys: “If you could describe your wellbeing journey in 3 text, what would they be?” Several words and phrases arrived up regularly.


Quite a few respondents chose “empowering” as 1 of their phrases. They have located power in their health and fitness journey. Sharing and leading from disease gives them a voice and a new goal.

“Unusual – disabling – empowering!”

“Realizations, hope, empowerment.”

“Empowering, standpoint, motivating.”

“Thriving, Empowerment, Hope.”

“Devastated, Prayer, Empowered.”


An additional word a number of folks outlined was “humbling.” Living with persistent disease strips away matters that most folks take for granted. Overall health, simple motion, and undertaking every day responsibilities may possibly be challenging. But these troubles guide to classes that individuals never anticipated.

“Unexpected, humbling, strengthening.”

“Definitely humbling.”

“A educating second.”


The concept of how tough it is to are living with continual disease also arose. Persons specifically pointed to ache, worry, and uncertainty.

“Confusing, painful, mysterious.”

In the primary, Boring, can be DEPRESSING, occasionally Horrifying.”

“Learning, living, uncertainty.”

Their Connexion 2022 activities

August was also the thirty day period of the yearly Connexion conference. This is a time to gather, find out from 1 a different, and hear from Health Union leadership. One Fb prompt questioned about encounters at Connexion: “Thank you so significantly for attending day 2 of Connexion!! What has been your favorite session so significantly? Have you realized anything at all new?”


Quite a few responses shared an appreciation for networking chances, specially the likelihood to network with other individual leaders who are portion of the SHN!

“I’m seriously taking pleasure in conference other affected individual leaders, but session-intelligent I beloved studying these days about networking.”

“The networking session was remarkable. I just cannot wait to fulfill some new good friends tomorrow when we get to network all over again.”

“I specially loved conference other affected individual leaders in the networking session.”

Clinical gaslighting

Yet another preferred session was one on clinical gaslighting. Being aware of that some others are also dismissed and disregarded by doctors felt affirming to quite a few people.

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

“The gaslighting panel was excellent!”

“Today’s health-related gaslighting panel. The discussion blew my head in a superior way.”

Thank you

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

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