The new Social Health Network (SHN) provides space to connect with other patient leaders. In August, we posted several prompts to the Social Health Network Facebook page to act as springboards for understanding one another and forming connections. Community members had many insights to share!
How summer heat affects them
One of the questions we asked was about surviving the summer heat: “We’re having never-ending summer here on the east coast of the United States. Does heat affect your health condition?” Overwhelmingly, the response was “yes!”
“Yes, very much, especially for my Lupus. Too hot can trigger a flare, so I have to stay cool.”
“Yes!!! My mast cell disease doesn’t allow for great temp control. The heat increases my chronic dehydration and affects the wear time of my ostomy bag.”
“Heat only affects CLL (chronic lymphocytic leukemia) patients if they’re already experiencing ‘night sweats,’ which some have. Add on top of that hot flashes that some of us also have – and it’s like having a microwave on the inside!”
“I actually do better in warmer weather. The humidity is what makes things challenging for me.”
Their health journey in 3 words
Another August prompt asked about community members’ health journeys: “If you could describe your health journey in 3 words, what would they be?” Several words came up repeatedly.
Many respondents chose “empowering” as one of their words. They have found strength in their health journey. Sharing and leading from illness gives them a voice and a new purpose.
“Unusual – disabling – empowering!”
“Realizations, hope, empowerment.”
“Empowering, perspective, motivating.”
“Thriving, Empowerment, Hope.”
“Devastated, Prayer, Empowered.”
Another word a few people mentioned was “humbling.” Living with chronic illness strips away things that most people take for granted. Health, easy movement, and performing daily tasks may be challenging. But these challenges lead to lessons that folks never expected.
“Unexpected, humbling, strengthening.”
“A teaching moment.”
The theme of how difficult it is to live with chronic illness also arose. People specifically pointed to pain, fear, and uncertainty.
“Confusing, painful, mysterious.”
In the main, BORING, can be DEPRESSING, sometimes FRIGHTENING.”
“Learning, living, uncertainty.”
Their Connexion 2022 experiences
August was also the month of the annual Connexion meeting. This is a time to gather, learn from one another, and hear from Health Union leadership. One Facebook prompt asked about experiences at Connexion: “Thank you so much for attending day 2 of Connexion!! What has been your favorite session so far? Have you learned anything new?”
Many responses shared an appreciation for networking opportunities, particularly the chance to network with other patient leaders who are part of the SHN!
“I’m really enjoying meeting other patient leaders, but session-wise I loved learning today about networking.”
“The networking session was amazing. I can’t wait to meet some new friends tomorrow when we get to network again.”
“I especially loved meeting other patient leaders in the networking session.”
Another popular session was one on medical gaslighting. Knowing that others are also dismissed and ignored by doctors felt affirming to many people.
“So far . . . definitely today’s gaslighting session.”
“The gaslighting panel was great!”
“Today’s medical gaslighting panel. The discussion blew my mind in a good way.”
We are grateful to those who engaged with these prompts! Thank you for being here and for all the work you do!
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