Why patient stories matter so dang much

As a trusted partner to global public health organizations, Small Adventures is often called on to collect, write, and share real-life experiences of chronic disease. I’ve been doing this for about 20 years and this type of work is one of my favorites. An organization and in turn, its dedicated volunteers and advocates are trusting me to take the messy, scary, overwhelming medical journey they experienced and relate it to complete strangers in the hopes that some connection will be formed. While it's easy to group these stories into archetypes and categories, there are always quirks, twists, and elements that make each one completely unique, and being trusted to share these stories with the world is an honor.

You know these types of stories – you see them as a part of awareness campaigns, in advocacy talking points, and partnered with The Ask at fundraising events. But these stories have the potential to serve a much greater purpose.

My approach is not just to write a summary where the hero triumphs over their health issue, but to tell an honest story and to use the opportunity to soften the landing for anyone in the awful early days of a diagnosis – those desperately Googling a condition, looking for hope, looking for real information, looking for something beyond statistics and hard-to-interpret research. This is important to me because I've been there, time and time again, with my own health and with those I love. Maybe you have been there, too. Doctors say, "Don't go home and Google this," but, of course, we all do. Humans are curious, we want to know what will happen next.

For me, it was being told I had preeclampsia when I was pregnant. Everything happened so fast with my oldest child that I didn’t have time to Google before he was born and it was only afterward that I realized how much “a little high blood pressure” could impact my future health. When I was told I had preeclampsia a second time in 2015, I knew a little bit more about the condition, but still couldn't stop myself from Googling to tell my future, and it was beyond terrifying.

I found statistics, studies, memorials, and prevention methods that I was too late for (and that brought on a feeling of guilt that still irks). This scenario has repeated itself for me as I’ve researched other conditions for those I love and it almost always ends the same - feeling scared, overwhelmed, devoid of actual human connection, and shutting the laptop. Patient stories matter and should be told honestly and with empathy. These are opportunities to, yes, share facts and practical information but also to connect with a real person on the other side of the screen. A person who may be scared and overwhelmed wants to see what may come next.

Here are some guardrails I put in place each time I write a patient story to be sure it connects:

1. Don’t make the story collection traumatizing. By this, I mean not having interview questions designed to bring on tears or emotional responses. Give the person interviewed space and time and a copy of the questions in advance. This is about trust, not a “gotcha moment” to raise big bucks.

2. Consent in storytelling and in placement. Sure, they signed your media release, but have you had a thoughtful conversation about where and how the story will be used? We all know a good story takes resources to tell and it makes sense to share one story across several channels, but the person you are interviewing needs to know and be OK with these placements. They also have the right to request that these stories be removed at any time, no questions asked.

3.     Is it useful? Is it necessary? Is it kind? Did you get this advice as a kid, too? If it is not necessary, kind, or helpful – keep your mouth shut. I take this position with statistics in stories. For example, having preeclampsia increases my future risk of stroke by 5x. Great. Is that necessary, kind, or useful? No. Here’s a similar way to include a fact in a way that won’t leave me (and millions of other women) with a vaguely impending sense of cardiovascular doom: Because having had preeclampsia significantly increases future stroke risk, women who experienced preeclampsia should work with a health care provider and do what they can to keep blood pressure in a healthy range today. This may include staying active, eating fewer processed foods, or starting medication.*

4. Vibe check. In the not-so-distant past, non-profits used a lot of “hero” stories that told a sanitized and sometimes embellished version of what life was really like with a chronic disease. If, when reading or watching the story you want to share, you see a sense of toxic positivity (not giving space to the difficult aspects of life with a chronic condition) or a sense of pity, it is time for a rewrite. Like any other challenge in life, health conditions come with ups (“I realized how important my family was to me.”) and downs (“I hurt, and my lifestyle change meant I lost my best friend.”). It’s important to balance that with the consent of the person whose story is being told and avoid harmful storytelling.

Remember that being a storyteller is a gift and a privilege. There is a lot of power to connect or divide with our stories. I don’t want to waste that opportunity for a connection. It's needed more than you know.

*These are my own words; they were not scientifically vetted by any organization. If you had preeclampsia and were previously unaware of its potential impact to your future health, I am sorry you had to learn that from a LinkedIn article. Please reach out to your doctor to find out how you can work to reduce your increased risk in the future.