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The brand new Social Well being Community (SHN) gives an area to attach with different affected person leaders. In August, we posted a number of prompts on the Well being Social Community’s Fb web page to function a springboard to grasp one another and type connections. Group members had plenty of concepts to share!

How does the summer time warmth have an effect on them?

One of many questions we requested was about surviving the summer time warmth: “We’re having an limitless summer time right here on the East Coast of america. Does the warmth have an effect on your well being? Overwhelmingly, the reply was “sure!”

“Sure, rather a lot, particularly for my Lupus. An excessive amount of warmth can set off an outbreak, so I’ve to maintain cool.”

“Sure!!! My mast cell illness doesn’t enable for excellent temperature management. Warmth will increase my continual dehydration and impacts how lengthy my ostomy bag is worn.”

“Warmth solely impacts CLL (continual lymphocytic leukemia) sufferers if they’re already experiencing ‘evening sweats,’ which some do. Add to that the new flashes a few of us even have, it is like having a microwave inside!”

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

Your well being journey in 3 phrases

One other advert from August requested about neighborhood members’ well being journeys: “For those who might describe your well being journey in 3 phrases, what would they be?” Numerous phrases got here up repeatedly.


Many respondents selected “empowerment” as considered one of their phrases. They’ve discovered energy on their method to well being. Sharing and main from sickness offers them a voice and a brand new goal.

“Uncommon, disabling, empowering!”

“Achievements, hope, empowerment”.

“Empowering, perspective, motivating.”

“Prosperity, Empowerment, Hope”.

“Devastated, Prayer, Empowered.”


One other phrase that some individuals talked about was “humiliating”. Residing with a continual sickness eliminates issues that most individuals take without any consideration. Well being, ease of motion, and performing day by day duties may be difficult. However these challenges result in classes that folks by no means anticipated.

“Surprising, humiliating, empowering.”

“Positively humiliating.”

“A instructing second.”


The difficulty of how tough it’s to dwell with a continual sickness additionally got here up. Individuals particularly famous ache, concern, and uncertainty.

“Complicated, painful, mysterious.”

Typically BORING, may be DEPRESSING, typically SCARY.”

“Study, dwell, uncertainty”.

Your Connection 2022 Experiences

August was additionally the month of the annual Connexion assembly. It is a time to return collectively, study from one another, and listen to from Well being Union leaders. A Fb advert requested about Connexion experiences: “Thanks a lot for coming to Connexion Day 2! What has been your favourite session thus far? Have you ever realized one thing new?


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

“I actually take pleasure in assembly different affected person leaders, however as for the session, I beloved studying about networking at this time.”

“The networking session was unbelievable. I am unable to wait to satisfy new buddies tomorrow once we reconnect.”

“I particularly beloved assembly different affected person leaders on the networking session.”

medical lighting

One other widespread session was one on medical gaslighting. Understanding that others are additionally dismissed and ignored by medical doctors was an affirmation for many individuals.

“To this point…undoubtedly at this time’s gaslighting session.”

“The gasoline mild panel was nice!”

“At this time’s gaslighting medical panel. The dialogue blew me away in a great way.”


We thank those that dedicated to those indications! Thanks for being right here and for all of the work you do!

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