The new Social Health and fitness Network (SHN) provides space to connect with other affected individual leaders. In August, we posted numerous prompts to the Social Wellbeing Community Fb website page to act as springboards for comprehending 1 a different and forming connections. Group members had several insights to share!

How summer months warmth impacts them

Just one of the inquiries we requested was about surviving the summertime heat: “We’re acquiring never ever-ending summer months below on the east coast of the United States. Does warmth impact your wellbeing ailment?” Overwhelmingly, the response was “yes!”

“Yes, pretty a lot, specially for my Lupus. Much too incredibly hot can induce a flare, so I have to keep great.”

“Yes!!! My mast mobile ailment doesn’t let for good temp management. The warmth will increase my long-term dehydration and influences the don time of my ostomy bag.”

“Heat only has an effect on CLL (continual lymphocytic leukemia) clients if they are already suffering from ‘night sweats,’ which some have. Increase on major of that scorching flashes that some of us also have – and it’s like obtaining a microwave on the inside of!”

“I basically do better in hotter climate. The humidity is what can make points demanding for me.”

Their health journey in 3 words and phrases

One more August prompt requested about community members’ wellness journeys: “If you could describe your overall health journey in 3 phrases, what would they be?” Several phrases arrived up repeatedly.


Lots of respondents selected “empowering” as a person of their words. They have discovered power in their well being journey. Sharing and foremost from illness gives them a voice and a new intent.

“Unusual – disabling – empowering!”

“Realizations, hope, empowerment.”

“Empowering, viewpoint, motivating.”

“Thriving, Empowerment, Hope.”

“Devastated, Prayer, Empowered.”


An additional phrase a number of individuals mentioned was “humbling.” Residing with serious ailment strips away issues that most individuals consider for granted. Wellbeing, straightforward movement, and doing each day jobs may well be tough. But these difficulties lead to classes that people never envisioned.

“Unexpected, humbling, strengthening.”

“Definitely humbling.”

“A teaching instant.”


The topic of how challenging it is to reside with chronic illness also arose. People particularly pointed to soreness, worry, and uncertainty.

“Confusing, painful, mysterious.”

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

“Learning, living, uncertainty.”

Their Connexion 2022 ordeals

August was also the thirty day period of the once-a-year Connexion assembly. This is a time to get, learn from a single an additional, and listen to from Wellbeing Union leadership. Just one Fb prompt questioned about encounters at Connexion: “Thank you so much for attending working day 2 of Connexion!! What has been your favourite session so much? Have you realized just about anything new?”


A lot of responses shared an appreciation for networking opportunities, specially the possibility to network with other patient leaders who are aspect of the SHN!

“I’m really experiencing assembly other individual leaders, but session-smart I liked discovering nowadays about networking.”

“The networking session was incredible. I cannot hold out to meet up with some new friends tomorrow when we get to network again.”

“I primarily liked conference other patient leaders in the networking session.”

Medical gaslighting

Yet another well known session was one on health-related gaslighting. Understanding that others are also dismissed and disregarded by medical doctors felt affirming to numerous individuals.

“So considerably . . . absolutely today’s gaslighting session.”

“The gaslighting panel was fantastic!”

“Today’s health care gaslighting panel. The discussion blew my mind in a excellent way.”

Thank you

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

By Ruby

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