Getting to Know Our Social Health Network Members

Getting to Know Our Social Health Network Members

The new Social Health Community (SHN) presents space to hook up with other affected person leaders. In August, we posted a number of prompts to the Social Overall health Community Facebook website page to act as springboards for knowing a person a different and forming connections. Community associates experienced a lot of insights to share!

How summer season warmth affects them

One particular of the issues we requested was about surviving the summer months heat: “We’re getting hardly ever-ending summer right here on the east coastline of the United States. Does heat influence your wellbeing ailment?” Overwhelmingly, the reaction was “yes!”

“Yes, incredibly substantially, specially for my Lupus. Too sizzling can set off a flare, so I have to remain cool.”

“Yes!!! My mast cell disorder does not let for terrific temp handle. The warmth raises my continual dehydration and impacts the use time of my ostomy bag.”

“Heat only impacts CLL (continual lymphocytic leukemia) sufferers if they’re now enduring ‘night sweats,’ which some have. Increase on top rated of that incredibly hot flashes that some of us also have – and it is like acquiring a microwave on the within!”

“I basically do far better in warmer temperature. The humidity is what can make issues complicated for me.”

Their overall health journey in 3 words

Another August prompt asked about neighborhood members’ wellbeing journeys: “If you could explain your health journey in 3 text, what would they be?” Several terms came up frequently.


Several respondents chose “empowering” as one particular of their phrases. They have located toughness in their well being journey. Sharing and leading from disease gives them a voice and a new function.

“Unusual – disabling – empowering!”

“Realizations, hope, empowerment.”

“Empowering, perspective, motivating.”

“Thriving, Empowerment, Hope.”

“Devastated, Prayer, Empowered.”


A further term a handful of folks stated was “humbling.” Dwelling with continual sickness strips away points that most individuals choose for granted. Health and fitness, quick movement, and undertaking daily jobs may be hard. But these issues direct to lessons that people never predicted.

“Unexpected, humbling, strengthening.”

“Definitely humbling.”

“A teaching instant.”


The theme of how difficult it is to live with long-term disease also arose. Men and women specially pointed to soreness, worry, and uncertainty.

“Confusing, distressing, mysterious.”

In the major, Dull, can be DEPRESSING, often Horrifying.”

“Learning, living, uncertainty.”

Their Connexion 2022 ordeals

August was also the month of the once-a-year Connexion assembly. This is a time to gather, find out from a single one more, and hear from Overall health Union leadership. A person Facebook prompt asked about ordeals at Connexion: “Thank you so considerably for attending working day 2 of Connexion!! What has been your beloved session so significantly? Have you realized anything at all new?”


A lot of responses shared an appreciation for networking chances, notably the chance to network with other affected individual leaders who are portion of the SHN!

“I’m really having fun with conference other affected person leaders, but session-smart I beloved studying currently about networking.”

“The networking session was wonderful. I can not wait around to meet some new buddies tomorrow when we get to network once more.”

“I specifically cherished conference other affected person leaders in the networking session.”

Clinical gaslighting

An additional well-liked session was one particular on medical gaslighting. Figuring out that some others are also dismissed and ignored by health professionals felt affirming to numerous people today.

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

“The gaslighting panel was great!”

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

Thank you

We are grateful to these who engaged with these prompts! Thank you for getting right here and for all the work you do!