We love to tell stories. And as storytellers, we know sometimes we just need to get out of the way and let you tell it. You own your story, and sharing it with us and the Health Stories Project community can be the bravest thing you do.
Below you will find stories we’ve written or curated and stories taken directly from our community. They might be raw and unfiltered, but we feel it is our members’ truths we need to honor and respect.
Isabel M. from Chaps, New Mexico is living with Hypermobile Ehlers-Danlos syndrome, or hEDS. At the age of 22, she’s already seen a lifetime of diagnoses. She’s spent half of the past 2 years recovering from 5 surgeries and at the time of
Heidi P. from Ohio, sent us the following story. Like 3,000 other community members, Heidi has multiple sclerosis (MS), and was diagnosed 29 years ago in 1992. Her MS story reflects what so many others who have chronic autoimmune conditions have told us.
Community Insights Are Valuable Our site will never be a place to come and get every fact or the latest piece of news about any health condition. However, we will continue to share results from surveys you generously respond to. Last year, we
We’re all experiencing this pandemic both together and in isolation. We checked in one last time in 2020 and asked how you all were doing. Some of the questions were new, and some were identical to questions we asked last spring so we could
Lisa and Matt are Health Stories Project members from Austin, Texas that believe their community made the difference when Matt had an unexpected hospital stay related to colon cancer. They allowed us to visit them (socially distanced!) to capture their story. Please join
Black Health Matters Providing health solutions for the mind, body and soul. A resource for health and wellness within the African American community. Website: https://blackhealthmatters.com/ Twitter: https://twitter.com/BHMinfo Black Women’s Health A national nonprofit dedicated solely to the health & wellness of Black
In Dallas, Texas, in the late 1970s, Gail Henkin was the youthful, earnest subject of a photoshoot. She smiled. She gazed at the camera. She felt a flutter of pride. Despite her grandmother’s death from lung cancer, she held a cigarette—and many poses—as
Community member, David G, sent in this story in response to one of our story requests. This is our first story about Moebius Syndrome., a rare neurological condition that researchers estimate affects 1 in 50,000 to 1 in 500,000 newborns. It can be
Dan “Dry Dock” Shockley is a Health Stories Project member from California who, after retiring from the military and surviving hereditary colon cancer, is the definition of a warrior. He recently responded to our Shared Experiences story request about people sharing important experiences
What happens when you develop a serious autoimmune condition at a young age? For young people living with Hidradenitis Suppurativa (commonly called HS), it can mean embarrassment, pain, confusion, and the frustration that comes with limited information. While the average age of onset
This story was written by a community member, Cindy B. She responded to one of our story requests about life with cancer. Two years ago, a growth in my pulmonary artery was discovered by accident. Since then, a diagnosis of fibromuscular dysplasia and
MacKenzie is a Health Stories Project member from Kentucky who is most passionate about changing the way people see folks with multiple sclerosis, “They tend to focus on all the things we can’t do instead of all the things we can.” She recently responded
For Art, who was diagnosed with HIV in January 1989, watching the COVID-19 pandemic unfold has been reminiscent of his experience living through the AIDS epidemic that ravaged the US in the 1980s and 1990s. “I grew up in the epicenter of HIV
As concerns about the coronavirus continue to mount, one organization is reminding governments and communities not to forget about people with disabilities. World Enabled, founded in 2003, aims to build inclusive societies for people with disabilities and older persons. With COVID-19 continuing to
Taryn J. age 26, was a natural homebody before a pandemic struck Washington state, and now staying at home is enforced by law. Jessica Cannon, age 27, commuted to Seattle by train for almost an hour to reach her job as an accountant,
Right now, the world is a scary and uncertain place. From disrupted treatment, lost work and wages, healthcare rationing, social isolation, and subsequent depression, the coronavirus (COVID-19) is disrupting the lives of every person in the U.S. (and the world!). These issues are
Taking the time to listen and care for your body is a critical life-skill. This is true for everyone, but especially when you’re living with chronic health conditions. Sylvia of Virginia is living with lupus SLE, type 2 diabetes, rheumatoid arthritis (RA), depression,
Jae knows a thing or two about change. A passionate writer and volunteer in Chicago, he discovered he was living with multiple sclerosis (MS) in 2019. We would like to thank him for sharing candidly about the first stages of this life-changing diagnosis.
This description of healing and personal growth was written by community member, Allyson L. She responded to one of our story requests. Please leave your words of encouragement and inspiration in the comments below. I’ve always been crafty. I took the basic art
When Health Stories Project invited readers to share their experiences with lupus, we received a lot of responses, which ranged from humorous to heartbreaking. Lupus, a long-term autoimmune disease in which the immune system goes haywire and attacks healthy tissue, affects everybody differently
Community Insights Are Valuable Our site will never be a place to come and get every fact or the latest piece of news about any health condition. However, we will continue to share results from surveys you generously respond to. Last year, we
We’re all experiencing this pandemic both together and in isolation. We checked in one last time in 2020 and asked how you all were doing. Some of the questions were new, and some were identical to questions we asked last spring so we could
Lisa and Matt are Health Stories Project members from Austin, Texas that believe their community made the difference when Matt had an unexpected hospital stay related to colon cancer. They allowed us to visit them (socially distanced!) to capture their story. Please join
Black Health Matters Providing health solutions for the mind, body and soul. A resource for health and wellness within the African American community. Website: https://blackhealthmatters.com/ Twitter: https://twitter.com/BHMinfo Black Women’s Health A national nonprofit dedicated solely to the health & wellness of Black
In Dallas, Texas, in the late 1970s, Gail Henkin was the youthful, earnest subject of a photoshoot. She smiled. She gazed at the camera. She felt a flutter of pride. Despite her grandmother’s death from lung cancer, she held a cigarette—and many poses—as
What happens when you develop a serious autoimmune condition at a young age? For young people living with Hidradenitis Suppurativa (commonly called HS), it can mean embarrassment, pain, confusion, and the frustration that comes with limited information. While the average age of onset
For Art, who was diagnosed with HIV in January 1989, watching the COVID-19 pandemic unfold has been reminiscent of his experience living through the AIDS epidemic that ravaged the US in the 1980s and 1990s. “I grew up in the epicenter of HIV
As concerns about the coronavirus continue to mount, one organization is reminding governments and communities not to forget about people with disabilities. World Enabled, founded in 2003, aims to build inclusive societies for people with disabilities and older persons. With COVID-19 continuing to
Taryn J. age 26, was a natural homebody before a pandemic struck Washington state, and now staying at home is enforced by law. Jessica Cannon, age 27, commuted to Seattle by train for almost an hour to reach her job as an accountant,
Right now, the world is a scary and uncertain place. From disrupted treatment, lost work and wages, healthcare rationing, social isolation, and subsequent depression, the coronavirus (COVID-19) is disrupting the lives of every person in the U.S. (and the world!). These issues are
When Health Stories Project invited readers to share their experiences with lupus, we received a lot of responses, which ranged from humorous to heartbreaking. Lupus, a long-term autoimmune disease in which the immune system goes haywire and attacks healthy tissue, affects everybody differently
Beth Morton was in her mid-30s on the cusp of finishing her PhD when the chronic migraines began. At the time, she was no stranger to debilitating migraine attacks — she’d been having them a couple of times a month for two decades.
I remember vividly when a close family member was hit by an asthma attack that was exacerbated by dust and mold in a large arena filled with horses. When we bought the tickets, we didn’t think about how a simple show could lead
Multiple myeloma survivor Sandy, says that “fighting this alone without support is a hard, rough road.” This is true not only for survivors but for family and caregivers as well. If someone you love is dealing with cancer you may feel overwhelmed, helpless,
“I have fits of uncontrollable laughter and it’s not fun or funny.” That’s how Jennifer explains life with pseudobulbar affect (PBA). Wendy has the same condition and describes her experiences: “It’s frustrating because you have no control over [laughing or crying]. They occur
When Michelle Rathman tells her personal story of how a successful public relations expert shifted her focus from representing bestselling authors to advocating for rural healthcare, the audience listens raptly. Hands always shoot up when she asks if anybody else had a medical
John Linnell knows how to put people at ease. When asked how he’s doing, he delivers a humorous response with impeccable timing. “If I were any better, I’d be twins,” he says, chuckling a little at his own well-worn bit. “But then I’d
This is the second of two articles about being a care partner to someone with terminal cancer. Click here to read Part 1. If you would like to share your health experiences, please sign up here. Tiffini Joseph lost her loving mother to lung cancer in
When it comes to fighting cancer, the timing is never ideal, but sometimes it strikes at the worst possible moment. Molly MacDonald had just endured a financially devastating divorce and was about to transition to a new six-figure job that would help her
Recently, friends of Health Stories Project had the chance to ride along with members of an organization called Young Survival Coalition at their annual Tour De Pink charity bike ride. The Young Survival Coalition (YSC) exists to ensure that no young person faces
Isabel M. from Chaps, New Mexico is living with Hypermobile Ehlers-Danlos syndrome, or hEDS. At the age of 22, she’s already seen a lifetime of diagnoses. She’s spent half of the past 2 years recovering from 5 surgeries and at the time of
Heidi P. from Ohio, sent us the following story. Like 3,000 other community members, Heidi has multiple sclerosis (MS), and was diagnosed 29 years ago in 1992. Her MS story reflects what so many others who have chronic autoimmune conditions have told us.
Community member, David G, sent in this story in response to one of our story requests. This is our first story about Moebius Syndrome., a rare neurological condition that researchers estimate affects 1 in 50,000 to 1 in 500,000 newborns. It can be
Dan “Dry Dock” Shockley is a Health Stories Project member from California who, after retiring from the military and surviving hereditary colon cancer, is the definition of a warrior. He recently responded to our Shared Experiences story request about people sharing important experiences
This story was written by a community member, Cindy B. She responded to one of our story requests about life with cancer. Two years ago, a growth in my pulmonary artery was discovered by accident. Since then, a diagnosis of fibromuscular dysplasia and
MacKenzie is a Health Stories Project member from Kentucky who is most passionate about changing the way people see folks with multiple sclerosis, “They tend to focus on all the things we can’t do instead of all the things we can.” She recently responded
Taking the time to listen and care for your body is a critical life-skill. This is true for everyone, but especially when you’re living with chronic health conditions. Sylvia of Virginia is living with lupus SLE, type 2 diabetes, rheumatoid arthritis (RA), depression,
Jae knows a thing or two about change. A passionate writer and volunteer in Chicago, he discovered he was living with multiple sclerosis (MS) in 2019. We would like to thank him for sharing candidly about the first stages of this life-changing diagnosis.
This description of healing and personal growth was written by community member, Allyson L. She responded to one of our story requests. Please leave your words of encouragement and inspiration in the comments below. I’ve always been crafty. I took the basic art
Rachel from Dallas, Texas lives with Narcolepsy and is determined to flip the script when it comes to invisible illness. She is especially concerned with fighting stigma surrounding life with narcolepsy and echoes what many with this condition say, “[there are movies where
This story was written by a new community member, Tove J. She responded to one of our story requests saying she is open about surviving a rare incurable disease “because other patients have shared their stories and they gave me hope.” Please thank her for
Lisa is a high school special education teacher living and working in Holmen, WI. While a job in education can be challenging in it’s own right, Lisa also lives with a painful and debilitating autoimmune condition called ankylosing spondylitis (that’s pronounced ank-kih-low-sing spon-dill-eye-tiss).
I survived two very rare cancers in two years which included many treatments and surgeries. I want to encourage others who are facing a cancer diagnosis, and have the following advice to share: The best thing you can do receiving an initial cancer
I have always been an artist. I’ve dabbled in a bit of every type of media, mostly painting, photography, and fibers. I did art every day in some way before I got diagnosed with Behcet’s disease, an extremely rare autoimmune disease, and granulomatosis
Community member, Lanie M, sent in this story in response to one of our prompts. What was the best advice you’ve ever received? Leave it in the comments below! “Never let your challenges make you bitter.” This is something my mom talked to
This candid, personal story was written by community member, Tanya W. She responded to one of our latest opportunities. Please thank her for her honesty and willingness to share in the comments below. When I first had diagnosed with lupus, I had two
This story was written by community member, Frank Noll. Don’t forget to leave a big THANK YOU for his advocacy work in the comments below. Many people think that someone with advanced lung cancer is fairly old, frail, infirmed and probably a cigarette
It wasn’t that long ago that bipolar disorder was believed to be another condition like depression or schizophrenia. “Manic Depression” was first recognized in 1854 by Jules Falret, but it wasn’t until the early 1970s that it was recognized by the U.S. Congress
Karen recently responded to one of our survey questions with her favorite hobby. Below is what she had to say. Having a chronic condition is a full-time job. Most of my time is spent attempting to keep my calendar of doctor appointments. I
The following inspirational story was written by community member, Giovanni Profeta. Help us celebrate his 2-mile swim in open water by leaving congratulations in the comments below! I am a sports enthusiast. Prior to my diagnosis, I was a swimmer and freediver. My
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