6 Ways Stanford Medicine X Changed The Way I Think About Patient “Communities”
At the fourth annual 2015 Stanford Medicine X, doctors, technologists, policy makers and “epatients” — patients who have blogs or active social media presence — came together to talk about the future of health care, to put it broadly.
There were big names: Eric Topol, author of The Patient Will See You Now who inspired around democratizing medicine, and the White House’s Claudia Williams, who gave us hope with an overview of the Precision Medicine Initiative. These topics will be covered in a future blog post with tie-ins to autoimmune disease.
But the ideas that left me most inspired as a chronic disease patient were the stories of other chronic patients, who all actively and creatively work to change the health system, and to make life better for their individual disease communities.
1. No matter how sick you are, tell your story. Online. Writing is healing, and you will help others going through the same struggles.
Abby Norman, who can be found on Twitter: @notabbynormal and on https://medium.com/@abbymnorman, struggled with misdiagnosed appendix issues for years, and continues to battle endometriosis, which may have autoimmune components.
She presented her story to a speechless group who could not believe how many doctors blew her off and ignored her symptoms.
She unites women with endometriosis on the #endosister hashtag on Twitter. She said that after battling her health issues and going into debt for them, she finally decided to write about them to help others, and also herself.
So when you are in the depths of despair – or on the flipside, feeling like you’re in a good place with your health – writing as a way to heal the health demons will also help spread awareness, insight, and make other people feel less alone.
2. When patient communities turn their back on you, find a new community. Or start one.
Jamia Crockett, @mammasissykat on Twitter, has multiple sclerosis and writes about it on MyMSHeels.com and her MS/mom blog, “MS is a Mother…” said when she was first diagnosed with MS, she walked into a local MS group and was told she was not sick enough and to come back when she couldn’t walk. She was so stunned by their response that she gave up looking for a community for a while and just braved MS on her own before finding her voice as a speaker and writer.
Alicia Staley, a three-time breast cancer survivor of AwesomeCancerSurvivor.com says it best: “Keep looking for a community – by googling, tweeting or Facebook. You’re going to find them eventually and if you don’t, you will feel the need to create it.”
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