Advice for Getting Started in Advocacy

The new Social Wellbeing Community (SHN) supplies house to hook up with other affected individual leaders. In August, we posted several prompts to the Social Overall health Community Fb page to act as springboards for knowing a person another and forming connections. Group users experienced numerous insights to share!

How summer warmth influences them

One of the queries we requested was about surviving the summertime warmth: “We’re having hardly ever-ending summer months below on the east coast of the United States. Does heat impact your health and fitness condition?” Overwhelmingly, the reaction was “yes!”

“Yes, quite considerably, especially for my Lupus. Way too warm can result in a flare, so I have to stay cool.”

“Yes!!! My mast mobile disorder doesn’t let for excellent temp command. The heat improves my chronic dehydration and has an effect on the have on time of my ostomy bag.”

“Heat only affects CLL (continual lymphocytic leukemia) clients if they are now enduring ‘night sweats,’ which some have. Incorporate on prime of that sizzling flashes that some of us also have – and it’s like possessing a microwave on the inside!”

“I essentially do greater in hotter climate. The humidity is what would make items challenging for me.”

Their well being journey in 3 words and phrases

Yet another August prompt questioned about neighborhood members’ well being journeys: “If you could describe your health journey in 3 words and phrases, what would they be?” Many phrases came up repeatedly.


Quite a few respondents chose “empowering” as one particular of their phrases. They have located toughness in their overall health journey. Sharing and foremost from sickness provides them a voice and a new function.

“Unusual – disabling – empowering!”

“Realizations, hope, empowerment.”

“Empowering, viewpoint, motivating.”

“Thriving, Empowerment, Hope.”

“Devastated, Prayer, Empowered.”


An additional phrase a handful of folks outlined was “humbling.” Residing with serious ailment strips absent points that most individuals acquire for granted. Wellness, simple motion, and executing day by day jobs may well be hard. But these worries guide to classes that folks never expected.

“Unexpected, humbling, strengthening.”

“Definitely humbling.”

“A instructing moment.”


The theme of how tricky it is to dwell with persistent disease also arose. People today especially pointed to discomfort, worry, and uncertainty.

“Confusing, unpleasant, mysterious.”

In the major, Tedious, can be DEPRESSING, sometimes Horrifying.”

“Learning, residing, uncertainty.”

Their Connexion 2022 experiences

August was also the thirty day period of the yearly Connexion conference. This is a time to obtain, discover from a person yet another, and hear from Wellbeing Union management. A person Facebook prompt questioned about activities at Connexion: “Thank you so substantially for attending day 2 of Connexion!! What has been your favorite session so considerably? Have you figured out something new?”


Several responses shared an appreciation for networking chances, especially the likelihood to community with other individual leaders who are portion of the SHN!

“I’m definitely experiencing meeting other client leaders, but session-smart I cherished mastering now about networking.”

“The networking session was incredible. I simply cannot wait to meet up with some new close friends tomorrow when we get to community all over again.”

“I especially loved meeting other patient leaders in the networking session.”

Professional medical gaslighting

A different preferred session was one on healthcare gaslighting. Realizing that other people are also dismissed and ignored by health professionals felt affirming to many people today.

“So much . . . definitely today’s gaslighting session.”

“The gaslighting panel was terrific!”

“Today’s health-related gaslighting panel. The discussion blew my mind in a excellent way.”

Thank you

We are grateful to those people who engaged with these prompts! Thank you for remaining in this article and for all the get the job done you do!

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