The brand new Social Well being Community (SHN) supplies area to attach with different affected person leaders. In August, we posted a number of prompts to the Social Well being Community Fb web page to behave as springboards for understanding each other and forming connections. Group members had many insights to share!
How summer time warmth impacts them
One of many questions we requested was about surviving the summer time warmth: “We’re having unending summer time right here on the east coast of america. Does warmth have an effect on your well being situation?” Overwhelmingly, the response was “sure!”
“Sure, very a lot, particularly for my Lupus. Too scorching can set off a flare, so I’ve to remain cool.”
“Sure!!! My mast cell illness doesn’t enable for nice temp management. The warmth will increase my continual dehydration and impacts the damage time of my ostomy bag.”
“Warmth solely impacts CLL (continual lymphocytic leukemia) sufferers in the event that they’re already experiencing ‘night time sweats,’ which some have. Add on prime of that scorching flashes that a few of us even have – and it’s like having a microwave on the within!”
“I really do higher in hotter climate. The humidity is what makes issues difficult for me.”
Their well being journey in 3 phrases
One other August immediate requested about group members’ well being journeys: “Should you might describe your well being journey in 3 phrases, what would they be?” A number of phrases got here up repeatedly.
Empowering
Many respondents selected “empowering” as one in all their phrases. They’ve discovered energy of their well being journey. Sharing and main from sickness provides them a voice and a brand new goal.
“Uncommon – disabling – empowering!”
“Realizations, hope, empowerment.”
“Empowering, perspective, motivating.”
“Thriving, Empowerment, Hope.”
“Devastated, Prayer, Empowered.”
Humbling
One other phrase just a few individuals talked about was “humbling.” Residing with continual sickness strips away issues that most individuals take without any consideration. Well being, straightforward motion, and performing each day duties could also be difficult. However these challenges result in classes that folk by no means anticipated.
“Sudden, humbling, strengthening.”
“Undoubtedly humbling.”
“A educating second.”
Tough
The theme of how troublesome it’s to reside with continual sickness additionally arose. Folks particularly pointed to ache, concern, and uncertainty.
“Complicated, painful, mysterious.”
In the principle, BORING, may be DEPRESSING, typically FRIGHTENING.”
“Studying, residing, uncertainty.”
Their Connexion 2022 experiences
August was additionally the month of the annual Connexion assembly. This can be a time to collect, be taught from each other, and listen to from Well being Union management. One Fb immediate requested about experiences at Connexion: “Thanks a lot for attending day 2 of Connexion!! What has been your favourite session to this point? Have you ever realized something new?”
Networking
Many responses shared an appreciation for networking alternatives, notably the prospect to community with different affected person leaders who’re a part of the SHN!
“I’m actually having fun with assembly different affected person leaders, however session-wise I liked studying immediately about networking.”
“The networking session was superb. I can’t wait to satisfy some new buddies tomorrow after we get to community once more.”
“I particularly liked assembly different affected person leaders within the networking session.”
Medical gaslighting
One other in style session was one on medical gaslighting. Realizing that others are additionally dismissed and ignored by docs felt affirming to many individuals.
“Thus far . . . positively immediately’s gaslighting session.”
“The gaslighting panel was nice!”
“At the moment’s medical gaslighting panel. The dialogue blew my thoughts in a great way.”
Thanks
We’re grateful to those that engaged with these prompts! Thanks for being right here and for all of the work you do!
