November 30, 2022

Attending to Know Our Social Well being Community Contributors

The brand new Social Well being Community (SHN) supplies house to connect to different affected person leaders. In August, we posted a number of activates to the Social Well being Community Fb web page to behave as springboards for figuring out one every other and forming connections. Neighborhood participants had many insights to percentage!

How summer season warmth impacts them

Some of the questions we requested used to be about surviving the summer season warmth: “We’re having unending summer season right here at the east coast of the USA. Does warmth impact your well being situation?” Overwhelmingly, the reaction used to be “sure!”

“Sure, very a lot, particularly for my Lupus. Too scorching can cause a flare, so I’ve to stick cool.”

“Sure!!! My mast cellular illness doesn’t permit for excellent temp regulate. The warmth will increase my continual dehydration and impacts the damage time of my ostomy bag.”

“Warmth best impacts CLL (continual lymphocytic leukemia) sufferers in the event that they’re already experiencing ‘night time sweats,’ which some have. Upload on most sensible of that scorching flashes that a few of us even have – and it’s like having a microwave at the inside of!”

“I in fact do higher in hotter climate. The humidity is what makes issues difficult for me.”

Their well being adventure in 3 phrases

Any other August suggested requested about group participants’ well being trips: “If it is advisable describe your well being adventure in 3 phrases, what would they be?” A number of phrases got here up time and again.


Many respondents selected “empowering” as one in every of their phrases. They have got discovered energy of their well being adventure. Sharing and main from sickness offers them a voice and a brand new objective.

“Bizarre – disabling – empowering!”

“Realizations, hope, empowerment.”

“Empowering, viewpoint, motivating.”

“Thriving, Empowerment, Hope.”

“Devastated, Prayer, Empowered.”


Any other phrase a couple of other folks discussed used to be “humbling.” Dwelling with continual sickness strips away issues that most of the people take without any consideration. Well being, simple motion, and appearing day-to-day duties is also difficult. However those demanding situations result in classes that individuals by no means anticipated.

“Sudden, humbling, strengthening.”

“No doubt humbling.”

“A educating second.”


The theme of ways tough it’s to reside with continual sickness additionally arose. Other people particularly pointed to ache, concern, and uncertainty.

“Complicated, painful, mysterious.”

In the principle, BORING, will also be DEPRESSING, now and again FRIGHTENING.”

“Studying, residing, uncertainty.”

Their Connexion 2022 studies

August used to be additionally the month of the yearly Connexion assembly. It is a time to assemble, be told from one every other, and listen to from Well being Union management. One Fb suggested requested about studies at Connexion: “Thanks such a lot for attending day 2 of Connexion!! What has been your favourite consultation up to now? Have you ever realized anything else new?”


Many responses shared an appreciation for networking alternatives, in particular the risk to community with different affected person leaders who’re a part of the SHN!

“I’m actually playing assembly different affected person leaders, however session-wise I beloved finding out these days about networking.”

“The networking consultation used to be wonderful. I will be able to’t wait to satisfy some new pals the next day to come once we get to community once more.”

“I particularly beloved assembly different affected person leaders within the networking consultation.”

Clinical gaslighting

Any other standard consultation used to be one on clinical gaslighting. Realizing that others also are disregarded and overlooked by way of docs felt declaring to many of us.

“To this point . . . indisputably these days’s gaslighting consultation.”

“The gaslighting panel used to be nice!”

“These days’s clinical gaslighting panel. The dialogue blew my thoughts in an effective way.”


We’re thankful to people who engaged with those activates! Thanks for being right here and for the entire paintings you do!