The brand new Social Well being Community (SHN) offers 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 season warmth impacts them
One of many questions we requested was about surviving the summer season warmth: “We’re having unending summer season right here on the east coast of the USA. Does warmth have an effect on your well being situation?” Overwhelmingly, the response was “sure!”
“Sure, very a lot, particularly for my Lupus. Too sizzling can set off a flare, so I’ve to remain cool.”
“Sure!!! My mast cell illness doesn’t permit for nice temp management. The warmth will increase my persistent dehydration and impacts the wear and tear time of my ostomy bag.”
“Warmth solely impacts CLL (persistent lymphocytic leukemia) sufferers in the event that they’re already experiencing ‘night time sweats,’ which some have. Add on prime of that sizzling 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 may 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 considered one of their phrases. They’ve discovered energy of their well being journey. Sharing and main from sickness offers 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 a couple of individuals talked about was “humbling.” Residing with persistent 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.”
“Positively humbling.”
“A educating second.”
Troublesome
The theme of how troublesome it’s to reside with persistent sickness additionally arose. Folks particularly pointed to ache, concern, and uncertainty.
“Complicated, painful, mysterious.”
In the primary, BORING, will be DEPRESSING, generally 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 possibility 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 right this moment about networking.”
“The networking session was superb. I can’t wait to fulfill some new mates tomorrow after we get to community once more.”
“I particularly liked assembly different affected person leaders within the networking session.”
Medical gaslighting
One other well-liked session was one on medical gaslighting. Figuring out that others are additionally dismissed and ignored by medical doctors felt affirming to many individuals.
“To date . . . undoubtedly right this moment’s gaslighting session.”
“The gaslighting panel was nice!”
“In the present day’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!
