Getting to Know Our Social Health Network Members

The new Social Health and fitness Community (SHN) presents space to connect with other affected individual leaders. In August, we posted numerous prompts to the Social Health Community Facebook website page to act as springboards for being familiar with one a further and forming connections. Neighborhood associates experienced quite a few insights to share!

How summer months heat has an effect on them

Just one of the inquiries we questioned was about surviving the summer months heat: “We’re owning never ever-ending summer season below on the east coastline of the United States. Does warmth have an effect on your wellbeing problem?” Overwhelmingly, the reaction was “yes!”

“Yes, incredibly a great deal, particularly for my Lupus. As well very hot can bring about a flare, so I have to continue to be great.”

“Yes!!! My mast mobile sickness doesn’t permit for good temp handle. The heat increases my chronic dehydration and has an effect on the put on time of my ostomy bag.”

“Heat only affects CLL (persistent lymphocytic leukemia) patients if they are now experiencing ‘night sweats,’ which some have. Increase on top of that warm flashes that some of us also have – and it’s like having a microwave on the within!”

“I basically do far better in warmer weather. The humidity is what will make issues hard for me.”

Their wellness journey in 3 phrases

Another August prompt requested about community members’ wellness journeys: “If you could explain your wellness journey in 3 text, what would they be?” Many words and phrases arrived up consistently.


Quite a few respondents selected “empowering” as a single of their words. They have identified toughness in their wellbeing journey. Sharing and primary from ailment presents them a voice and a new reason.

“Unusual – disabling – empowering!”

“Realizations, hope, empowerment.”

“Empowering, perspective, motivating.”

“Thriving, Empowerment, Hope.”

“Devastated, Prayer, Empowered.”


A further phrase a several people today pointed out was “humbling.” Living with chronic disease strips absent items that most folks take for granted. Wellness, uncomplicated motion, and performing day by day duties may well be tough. But these issues direct to classes that people in no way expected.

“Unexpected, humbling, strengthening.”

“Definitely humbling.”

“A instructing second.”


The concept of how tricky it is to dwell with persistent illness also arose. Persons specifically pointed to discomfort, concern, and uncertainty.

“Confusing, agonizing, mysterious.”

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

“Learning, living, uncertainty.”

Their Connexion 2022 activities

August was also the month of the annual Connexion meeting. This is a time to get, study from one particular a further, and hear from Health and fitness Union management. One Fb prompt asked about ordeals at Connexion: “Thank you so significantly for attending day 2 of Connexion!! What has been your preferred session so considerably? Have you realized everything new?”


Lots of responses shared an appreciation for networking prospects, significantly the opportunity to network with other patient leaders who are element of the SHN!

“I’m really having fun with conference other client leaders, but session-clever I cherished learning right now about networking.”

“The networking session was amazing. I just can’t wait to meet up with some new close friends tomorrow when we get to community all over again.”

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

Medical gaslighting

Another well known session was one on healthcare gaslighting. Understanding that others are also dismissed and overlooked by medical practitioners felt affirming to quite a few people today.

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

“The gaslighting panel was good!”

“Today’s professional medical gaslighting panel. The discussion blew my mind in a good way.”

Thank you

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

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