Experiencing a serious illness can be isolating, particularly if it’s a condition like sepsis, one that many people have never heard of. If you’re recovering from sepsis or you have a loved one who had sepsis, you might feel alone, like no one understands what you are going through. This makes it difficult to ask questions, perhaps even hard to know what questions to ask in the first place, and to learn what is “normal,” and what isn’t.

Sharing stories about survival and loss is something that many of us do to cope with serious and traumatic events. Reading stories of how others experienced similar situations reminds us that we’re not alone. And people tell their stories for a variety of reasons. For some, sharing a story helps validate what happened, for others, telling the story out loud or putting it in words on the screen or paper helps organize thoughts and helps them figure out what happened. And yet others, like Courtney Dewer, share their story to help educate or warn others.

Dewer lost her 13-month-old son, Lucas, to sepsis this past April. Although his death was recent, Dewer submitted his story to be featured in the Sepsis Alliance Faces of Sepsis. “I wanted to share Lucas’ story as both a way to honor him as well as to educate others about this terrible illness and how quickly it progressed,” she said. “I wasn’t aware of the symptoms of sepsis myself and maybe if I was, I would have reacted sooner. I hope that by sharing his story, others will be more aware of the symptoms should they ever present themselves in a loved one, particularly in a young child such as Lucas.”

More than 800 stories posted

Faces of Sepsis began in 2011 as a way for people to share their stories with other visitors to the site, Marijke Vroomen Durning, Director of Content for Sepsis Alliance, explained. “We thought we would get a few stories to post, but the stories were shared widely on social media and the submissions kept coming in.” There are now more than 800 stories from people from all walks of life.

Once the stories started coming in, it didn’t take long for the Sepsis Alliance team to pick up on a common theme from survivors: the long-lasting and often life-changing issues that can be caused by sepsis. Many survivors felt alone, unheard, and not understood by healthcare professionals, and in some cases, by friends and family. They didn’t understand the possible long-lasting effects of sepsis. These stories resulted in an effort by Sepsis Alliance to not only provide education about sepsis, but also about post-sepsis syndrome.

There were also tributes, written by parents, children, and siblings, about loved ones lost to sepsis. Often, the contributors felt responsible for not picking up signs earlier or not pushing their loved one to seek help. And they too, felt alone. “We would get some stories from people who were so angry at what had happened,” Vroomen Durning said. “I would write back, thanking them for sharing their story and expressing how sorry we were for all they had gone through. Very often, the contributor would quickly respond with an apology for sounding so angry, telling us that sharing their story helped put things into perspective, and they were grateful for the opportunity.”

Sepsis can affect anyone

When Sepsis Alliance puts out literature to educate members of the public about sepsis, one of the most important facts constantly mentioned is that sepsis can affect anyone. One method of getting that message out is through the Faces of Sepsis stories. The goal was for site visitors to see people who could be their relatives, neighbors, teachers, friends, or coworkers. “When I saw the Faces of Sepsis stories, I quickly realized two things; first, that I am not alone in my grief and second, that sepsis does not discriminate. I saw men, women, girls and boys, of all ages and backgrounds,” Dewer said.

The stories also provide readers with a way to learn about symptoms they may not have previously known about. “We have received emails from people saying that they picked up on symptoms in someone because of what they read in a Faces of Sepsis story,” Vroomen Durning said. “To me, that is wonderful, to know that these stories may prevent serious illness in someone else.”

Sharing your story

If you would like to share your story or submit a tribute to a loved one who has died from sepsis, simply visit the Faces of Sepsis page and fill out the form. There is no limit for length, but the most read stories are no longer than 400 to 600 words. “We do a light edit for spelling and to ensure that the story is easy to read and without obvious errors,” Vroomen Durning explained. “If there is anything that is unclear or we need to make substantial changes, we always double check with the contributor first, but we want to keep the stories in the contributors’ voice as these are their stories, not ours.”