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Sharing Stories of Trauma Can Help Healing: Faces of Sepsis

July 1, 2020

In the 9 years since Sepsis Alliance launched its Faces of Sepsis feature, more than 1,200 people have shared their stories of  the trauma of sepsis, surviving sepsis, or losing a loved one to sepsis. Some stories are angry, some are heartwarming, others heart breaking. There are stories that evoke strong emotions and some that may have saved lives. Not long after the feature was launched, a reader sent an email to Sepsis Alliance. He had recognized symptoms in a neighbor. At his urging, the neighbor sought medical help before sepsis progressed too far.

The Need to Share Trauma Stories Isn’t New

Sharing trauma stories isn’t new. Many studies have confirmed how helpful journaling or sharing stories can be in the recovery process. Julie Kays, MS, LCPC, NCC, a licensed clinical counselor at the Counseling Center at Stella Maris in Timonium, MD, said that sharing stories of trauma can be empowering. “You’re giving voice to your own experience. When we’re going through hard times, often we process things internally, in our heads. We might reach out to others for support and share pieces of our story, but they’re usually just pieces. So being able to share your whole story from beginning to end gives value to that experience, and not only is it empowering in the act of sharing your story, but in the process of writing it.”

Julie explained that often, one of the first things she does with new clients who have lived through a trauma is to invite them to share their stories either one-on-one or in a group setting. “I think that’s because it is so powerful to be able to share the entirety of your experience and have it witnessed by other people. It’s a way of kind of breaking that outer shell and moving from an internal process, making sense of things. I often say that when we experience intense emotions, it’s necessary to feel them, but it’s also necessary to express them.”

Why Faces of Sepsis?

In 2011, Sepsis Alliance realized that many sepsis survivors and people who lost loved ones to sepsis thought they were alone. They didn’t know anyone else who had gone through anything like the trauma they experienced. And many lived with long-lasting effects after they were sent home. It was apparent within a few months of launching Faces of Sepsis that people were continuing to experience serious health issues since having sepsis, both physical and cognitive. Yet, these problems weren’t recognized by the healthcare community and the public as being connected to sepsis. At this point, Sepsis Alliance started calling these problems part of post-sepsis syndrome.

“By sharing your story online, you have an opportunity to help others whose lives have been impacted by sepsis,” explained sepsis survivor Katy Grainger. “It’s also a wonderful way to share your story with family and friends so they can experience it from your perspective. The added bonus, which I wasn’t expecting, is that it really gives you a chance to work through your experience with sepsis.”

Faces of Sepsis Then and Now

Larry Przybylski was one of the first people to submit a Faces of Sepsis story in 2011. A call was put out on Facebook, asking if people were interested in having their story on the site. Larry’s story was about his mother Joyce, who had died of sepsis the previous year. “I was determined that mom’s death would not be in vain, that her story might help at least one person,” he said. “Mom was always about helping others. I felt like I wanted people to know that it can happen to anyone and so fast. I wrote with a sense of urgency.” Before his mother became ill, Larry had never heard of sepsis.

Katy is one of the most recent contributors. She found Sepsis Alliance when she was first diagnosed with septic shock. “The amazing website provided us comfort knowing we were not alone and that there were resources available to educate and guide us through the initial diagnosis, time spent in the ICU, medical treatment and the recovery process including dealing with post-sepsis syndrome,” she said. “I felt compelled to write my story in order to give back to the community that had provided me so much support from the very beginning.”

Overcoming Hurdles to Tell Your Trauma Story

The idea of writing down your trauma story can be frightening. “It can be very scary, absolutely, because I think we tend to shy away from particularly intense emotions,” Julie said. “But I often remind people that when they’re writing, they have control too. So if you’re writing and you find yourself stepping into territory that feels too raw or you can’t go there, you don’t have to.” Some people are overwhelmed or afraid they’re not a good enough writer, or that writing everything down will be too painful.

“That is a realistic concern, that people are kind of afraid of opening Pandora’s box and not being able to go back through it again,” Julie agreed. “Certainly I would encourage people who are still traumatized by their experience, that they feel like they need support, to reach out for some additional support through counseling if they feel like they need more professional help and they’re having trouble just processing their experience and it feels too raw.”

Katy understands this because it took her over a year to feel ready to share her story. “During that first year of recovery after sepsis and subsequent amputations of my lower legs and several fingertips, my focus was on my own recovery, both physical and mental. Once I started feeling strong and confident again, I really felt compelled to share my journey with others in hopes that it might lift them up and give them hope for their own recoveries.”

Some Tips to Help Write Your Trauma Story

If you want to write your story about the trauma. you experienced, but you’re not sure how to start, here are some tips:

  • To reduce interruptions, find a quiet time and place to write.
  • If you’re not sure where to start, try a little brainstorming. Write down your thoughts as they come up. They don’t need to be full sentences, they don’t even have to be sentences. Just get the words on the paper or computer screen. If it’s stressful, take a break.
  • Don’t rush it unless you feel you need to get it done all in one shot or you might not finish it.
  • Do it for yourself. While you will be sharing your story, it has to be for you.
  • Watch your expectations. You won’t know how you will feel when you see your story online. Nor can you know how others will respond. It’s best to let go of any expectations that you have.

Seeing Your Story Online

Once you have written your story, you have to decide if you want to share it. There’s nothing wrong with writing in a journal and never showing anyone. Or, you can share it with someone you trust, your counselor, or with people in a group setting. If you choose to share your story in a platform like Faces of Sepsis, you are sharing it with thousands of people who come to the site to learn more about the illness. You not only help yourself by writing your story out, but you help others learn about the issue. Larry said, “When I saw [my mother’s] story I felt relieved, like I had put information out there that needed to be read before it was too late for someone else.”

Katy’s reaction to her story was one of empowerment. “It made me feel as though I had taken control of what had happened to me when sepsis nearly took my life,” she said. “I felt less a victim and more in control of my own story. I also felt less alone in sharing this journey with so many other people who had suffered from sepsis like I had.”

These stories all together, help form a community. These are people who understand how much sepsis can affect not just one person but many in their circle. “Community is built because people are hearing each other’s stories, but are also able to provide support to one another through that,” Julie said.

If You’re Not Ready to Share Your Story

Everyone has their own timeline as they work through the rehabilitation and recovery process following a serious illness or trauma. Some people want to talk about it right away, while others choose to keep their thoughts and emotions to themselves. “I think the reasonings probably vary for people who want to keep [their story] to themselves,” Julie said. “Maybe they’re not ready. Maybe it does feel too personal and raw, maybe it doesn’t feel safe or comfortable to allow that level of vulnerability with other people. They could be just in a place in their own process where that just doesn’t feel safe, whereas those that do [share] are at a point where they realize that next step might offer something back to them, whether it’s that connection or being heard and witnessed for their experience and not feeling alone and feeling part of that community by being present, especially in a public forum such as your website.”

Submitting Your Story to Faces of Sepsis

If you are thinking about sharing your story, the process is easy. Go to Faces of Sepsis and click on Send Us Your Story. If you’re not confident with your writing skills, especially if English isn’t your first language, don’t worry about it. Stories are lightly edited to correct misspellings and to ensure the story is easily understood. You will receive an email to confirm your email address. There may be some questions regarding your story if anything needs to be clarified. Once your email has been verified and any questions answered, your story is scheduled. You will receive an email telling you when it is posted.

“Submit the story no matter how painful it is to write,” Larry said. “One person, even if one person is saved by it, you’ve saved a whole world.”

Katy agrees. “I encourage everyone to take some time to think about the journey they have been through with sepsis and write it down, first for yourself, and eventually to share with others. We each have a powerful story to share about all that we have been through. I really believe that taking charge of your story is a big step in your recovery.”

To learn more about surviving sepsis and its related trauma, watch the Sepsis Alliance webinar: Faces of Sepsis: Survivor Panel. Presented by sepsis survivors for sepsis survivors, this webinar includes a panel discussion about life after sepsis. Three sepsis survivors tell their stories and answer questions about their experiences with sepsis, as well as how they found purpose and returned to life after sepsis.