Getting to Know Our Social Health Network Members

The new Social Overall health Community (SHN) supplies area to link with other affected individual leaders. In August, we posted various prompts to the Social Overall health Network Facebook web page to act as springboards for being familiar with 1 a different and forming connections. Local community associates had many insights to share!

How summer time warmth affects them

A single of the questions we requested was about surviving the summer months heat: “We’re possessing under no circumstances-ending summer below on the east coastline of the United States. Does warmth impact your wellness problem?” Overwhelmingly, the reaction was “yes!”

“Yes, incredibly significantly, in particular for my Lupus. Also scorching can cause a flare, so I have to keep great.”

“Yes!!! My mast cell ailment doesn’t enable for wonderful temp handle. The heat will increase my chronic dehydration and affects the have on time of my ostomy bag.”

“Heat only influences CLL (persistent lymphocytic leukemia) sufferers if they are previously enduring ‘night sweats,’ which some have. Include on top of that warm flashes that some of us also have – and it is like owning a microwave on the inside!”

“I basically do greater in warmer climate. The humidity is what can make matters difficult for me.”

Their health journey in 3 text

An additional August prompt questioned about neighborhood members’ health journeys: “If you could explain your health and fitness journey in 3 words, what would they be?” Various phrases arrived up consistently.

Empowering

Quite a few respondents selected “empowering” as just one of their words and phrases. They have uncovered toughness in their overall health journey. Sharing and major from ailment presents them a voice and a new intent.

“Unusual – disabling – empowering!”

“Realizations, hope, empowerment.”

“Empowering, perspective, motivating.”

“Thriving, Empowerment, Hope.”

“Devastated, Prayer, Empowered.”

Humbling

A further term a handful of men and women described was “humbling.” Living with chronic disease strips away points that most people take for granted. Overall health, simple movement, and performing daily responsibilities could be hard. But these worries direct to lessons that folks hardly ever anticipated.

“Unexpected, humbling, strengthening.”

“Definitely humbling.”

“A teaching moment.”

Difficult

The topic of how tricky it is to are living with chronic ailment also arose. Men and women especially pointed to agony, concern, and uncertainty.

“Confusing, distressing, mysterious.”

In the main, Boring, can be DEPRESSING, often Terrifying.”

“Learning, residing, uncertainty.”

Their Connexion 2022 encounters

August was also the thirty day period of the annual Connexion assembly. This is a time to obtain, study from 1 an additional, and hear from Overall health Union management. 1 Fb prompt questioned about experiences at Connexion: “Thank you so substantially for attending day 2 of Connexion!! What has been your favored session so considerably? Have you learned just about anything new?”

Networking

Quite a few responses shared an appreciation for networking prospects, notably the likelihood to network with other affected person leaders who are element of the SHN!

“I’m actually having fun with conference other individual leaders, but session-intelligent I beloved finding out today about networking.”

“The networking session was astounding. I just can’t wait around to fulfill some new buddies tomorrow when we get to network again.”

“I in particular liked assembly other client leaders in the networking session.”

Health-related gaslighting

Yet another common session was 1 on healthcare gaslighting. Realizing that many others are also dismissed and overlooked by medical doctors felt affirming to quite a few people today.

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

“The gaslighting panel was great!”

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

Thank you

We are grateful to individuals who engaged with these prompts! Thank you for currently being below and for all the do the job you do!