When it comes to lived experience, we should look at the term as an umbrella. The term covers many aspects and considerations across efforts and spaces. This includes an array of activities, efforts, and strategies. Lived experience is a field on its own because the nature of the work shares overarching themes across efforts, but lived experience is also a key thread of effort within other fields. Many of us are familiar with lived experience in substance use, recovery, and disability spaces. Beyond those, lived experience is in almost every socially-centered field from mental health to suicide and even in youth-focused work. 

Professionalizing lived experience as a single field would be a gargantuan task because so many adjacent fields operate differently. This can be due to governance, funding stipulations, histories of how the fields came to be, and on and on. This separation, while challenging in many aspects, also creates opportunities for social fields to deepen their unique lived-living experience practices. This also means that within each of these spaces, lived experience leaders can arise in ways that may not empower or create opportunity the same if we were all operating as a larger space altogether.

Still, there is one shared arena where we all intersect and commonly encounter one another, and that is the space of storytelling. We all know what stories are, and how we engage with them in our work. We know advocates or activists who share their personal narratives, often in the hopes of helping raise awareness or change systems. These leaders shift dialogue by ensuring we don’t just see problems as statistical or financial in nature. Because of them, we see problems through a lens of humanity, one that is driven by passion and an intimate understanding of the impact an issue can cause. 

Storytelling as a lived-living experience activity has unique features, challenges, and strengths. But the truth underlying each of these is that storytelling has not been practiced from an ethical or standards foundation historically. This means that we don’t always see the best that can happen as a result of the stories that are shared. That’s not to say that the stories we’ve encountered aren’t powerful or meaningful, or even necessary. It simply means that something we all know, something as common as storytelling, isn’t automatically a best practice just because it’s everywhere. 

While we all know the term and the action, we don’t all understand the nuanced features of storytelling. Sometimes, we even classify it incorrectly altogether. We have given it a power over our work that we don’t always rightfully or ethically wield. This misunderstanding has caused some challenges, to say the least. One of which is the pressure that is placed on people with lived-living experiences to share and do so very publicly, whether it is right for them or not. This is unethical. There is no nice, clean, or better way to say it. 

Pressuring people, even through encouragement, is harmful. It forces them to display a harm they may not have processed. One that may be currently causing distress. One they may need more time to understand how to navigate. While we may see value in someone’s story, our opinions do not matter. Our opinion can have invisible consequences for them that they are then left dealing with while we likely don’t even know what we’ve “encouraged” them to undergo.

To address this and other challenges that stem from mislabeling, we first need to recognize that storytelling is one of two main lived-living experience communication categories. The second and truly larger category is lived-living experience disclosure. Disclosure shares some space and features, but can also stand on its own as storytelling does. Storytelling is a very specific messaging, awareness, or educational tool, whereas disclosure is a personal identity-centered activity. People who are sharing their stories are disclosing, but people who disclose do not necessarily want to share their stories. We must start here, always. 

In the work, our limited view of what lived-living experiences really are has done a bit of a disservice to folks because we so often equate disclosure with storytelling itself. But not everyone feels comfortable sharing their stories publicly. And there is this unintentional expectation that if I don’t want to stand on stage, maybe I’m not helping in the way that I should be. Maybe I am not “using” my story for healing or good. Maybe my story has a purpose beyond my wellbeing needs, and I should put others first.

Disclosure in general requires psychological safety, and it requires a level of understanding of your own experience and a level of security in your processing before you might want to divulge that to anyone else. Whereas in storytelling, there is this theme of, in telling, we are helping; in telling, we are healing, but the reality is that there is very little work around what storytelling does to the person who shares. Oftentimes we don’t understand the negative consequences of what that could end up doing to an individual. Most rarely even consider that possibility.

The truth is that once you have told your story, not only have you shared, you’ve shared very publicly with strangers who don’t always understand what you’re saying. Not just because they may misunderstand the words that you’re speaking, but because they may have never experienced it themselves. There is a filter of interpretation that can misinterpret what your meaning is, and this happens all the time in everyday communication. 

There is also this belief that because a person has disclosed this story to me, and I feel it may be helpful because I found meaning in it, they should obviously share it with others. But when we disclose, we often do so for personal motivations stemming from feeling safe. That’s not to say we are always right in that feeling because we can all experience negative consequences from a disclosure, but that personal disclosure has nowhere near the risk magnitude of storytelling. 

Storytelling is one particular lived-living experience activity or effort, and it is not an appropriate solution for everyone. It’s very important that in the work of lived experience we distinguish the two, and that we understand which one is appropriate in what space. More so, we must not impose our feeling that a story holds value over the storyholder themself. We should not positively pressure people to open themselves to potential harm.

We should look at disclosure as a practice that is trauma-informed, person-centered, and embedded in different ways across strategies. We must separate it from storytelling, and we must embed the safety elements of trauma-informed disclosure into storytelling practices. 

Stories are pieces of us, we must honor these pieces and handle them with care.