I used a bad word.

It will upset some.

The bad word shouldn’t be read or said. But that doesn’t stop it from existing.

My not saying the word doesn’t make it less true. It doesn’t change the fact that many have been taken for granted, tossed aside, or dismissed beyond the parts of them that were deemed useful. “We,” the lived experience community, have sometimes outlived our use in professional spaces.

How awful to type, to write, to dare highlight.

I’m not trying to be confrontational (well, not at this moment). I’m not here to divide or shame. I simply want us to take a good, hard look at the truth. The very ugly, very harsh truth. If you’re here and curious, please proceed. If you’re already angered by the bad word I wrote, you should probably look at some cute puppy or kitten videos and go about your day in a different way. The truth won’t change, and our willingness or inability to do so ourselves is really the issue at hand.

Experiences drive everything.

In professional spaces, we have been “engaged” in order to advance best practices, elevate efforts, raise awareness, or create more meaningful approaches. Lived experiences are tapped for research over and over and will be forever. We have been sourced, referenced, and cited (at times) so that authors can enlighten, expand knowledge, and sometimes just keep their jobs. (Oops, I said another bad.)

But let’s be honest: if you know a researcher, you know the struggle of staying relevant. They must publish. They must stay on the cusp of content creation. They must find new ways of sharing insights or looking at society’s same old problems. They do this by engaging people who have or are living through. They ask us questions, deep and intimately pointed ones. They ask us to share things we wouldn’t dare share with those we love and to do so with a stranger from whom the whole world can learn. I will tell you this deeply vulnerable piece of me to help others because it may not help me. This information I was holding within may leave me feeling… who knows how. I only hope that as I untangle my truth, I am not left feeling without peace, comfort, or a sense of myself. I hope that I won’t need support or after-care because care is rarely considered, let alone provided.

While they use me to maintain their title, credibility, and lifestyle, I do it for free. I do it for free because I might be swayed in some way if money were attached. Oh, wait. Maybe I can be incentivized with points. Maybe an innovative person will offer me a gift card that only takes 20 pages of fillable forms to access. Maybe the points will add up, and I can buy some gas to get me to the work I just missed because I was trying to help a stranger who would help a stranger. I’m twice removed from making a difference here, and my name will never be known. I only hope my manager doesn’t fire me because how do I explain without outing myself? How do I show that my heart led me to help, even when it wasn’t ready to clock back in without all of it tucked neatly in place? Quiet heart, we have to be public-ready, all on our own.

Then there is the speaking.

Let me call it storytelling, though.

That takes some professional qualities away.

Professional means paid, and we can’t afford to do that.

We have to fundraise to keep ourselves afloat. We can use these stories to open hearts… and wallets, but we don’t have enough to compensate the storyowners. Never mind where we would be without them. Never mind that they keep our efforts bringing in donors. They should appreciate the publicity. Even if they don’t understand the after-effects that will haunt them for the rest of their days. People couldn’t possibly misunderstand why they would share or accuse them of selfish agendas. They will be fine and happy knowing they helped, even if we never tell them the quantifiable impact they created for us.

Let’s host an event to raise awareness! I will find the right speaker who fits our needs.

You can tell me your story, but only in the ways I approve. Oh, hey, don’t say that thing. It makes me uncomfortable. Oh, no, don’t bring your son. He’s far too young to have ever been impacted by life. Oh, can you show up like this? Not that? Do this, but don’t do that. Can you add a few things that might not fit what works best for you? Thanks!

I’ll add you to our event, and there’s a 75% chance I’ll spell your name correctly. Let’s not make it awkward by telling me I’m wrong. If you have a PhD, we definitely won’t add Dr. to your name. You can’t be an expert and experienced in life. Those things are diametrically opposed.

Now, please show up on time for your storytelling session. When you are done, you can network for a few moments but cannot attend the event unless you paid. You are here to provide a story. One that will hopefully scare our audience into submission with a clear and miraculous call to action. When done, you can return to your place, far away.

I’ve spoken to countless speakers, and I’ve asked most of them, “How many events reached out to you after to just check on you or say thank you?” The majority look at me like I’ve asked them something unheard of, unspeakable, impossible. More than I want to share, say, “None.” Not once have they been followed up with once they did the thing.

Remember, you can’t be an expert, not if you have experienced pain or trauma. We only have one lesson to learn from you, and it isn’t based on evidence or drawn from communities. Your value is the invisible incident. The one that can make us feel. Your value is in yesterday—not the days when pain forced you to heal. Your value is not as a professional because you are not polished, poised, or painstakingly predictable. Your value is a modicum, nothing more.

Hey, it’s okay. You never personally said these things to me. You didn’t speak them aloud. I’m not angry, or hurt, or expecting an apology because these are the standards we have all stood on for so long. Those of us with experience are used to this. We know when we agree. We are unfazed by these happenings because they happen so often. I probably wouldn’t know what to think if these expectations didn’t reinforce my lived reality.

Our truth is that we are just thankful to be considered. We are grateful you’ve given us an opportunity. We are hopeful that we can help and will do it however you allow. We will show up and sit silently, even though your words are not a shared experience. We will nod, smile, and speak softly so as not to disturb leadership, the funders, or the community partners. We will do what is necessary because we know. We know the pain, the isolation, the fear of not understanding our experience. We know the struggle of deciphering ourselves alone, and we hope that our stories and experiences can help unravel that pain for others so they don’t have to feel as uncertain as we once did.

We want to thank you for your consideration and inclusion. We want to say how much it means that you slotted us into your agenda, even if the work does not resemble the healing we need. That doesn’t matter right now. All that matters is that we are not shoved to the side like we had been. All that matters is this opportunity in the hopes it spurs another.

Please understand. These practices are not what’s best. They are only what has been. These practices tell us that we do not add value and that our voices have limited influence. People with lived experiences are all around you in this world, in your work. Some are loud and strong. Some are quiet. Many are watching how we are engaged, empowered, or limited. Some want to be seen as professionals and treated as such. Some want to be voices and advocates, railing against the systems that have not considered the consequences we’ve been forced to live through. Many just want to be valued. We know what we bring to the table or what we are learning about how we are perceived because of how we are invited and included.

So, please be mindful of how you invite us and include us. You could be telling someone they have little to offer, and we both know that is simply untrue.

We need best practices for engaging people with lived experiences.

This should include:

• *Compensation- experience is an expertise. Pay people for their expertise, their time, and their care. Pay them what other experts are receiving and do not for a second ask if it is ethical or could impact the work. It will impact the work and in the ways it should.
• Storytellers should be treated like professional speakers. Not all will have the same level of experience or field knowledge (speaking/communication), but if you are engaging people for a service, they should be treated the same. If you don’t know how to engage with a professional speaker, Google it.
• Ask how people want to be credited or listed before you put them on paper. Do not assume you know.
• If you list every other expert with letters behind their name, do the same for the person with experiences.
• Do not take liberties with someone’s bio—ever. Ask if things can be edited or updated.
• It doesn’t matter how public someone’s story is. It is their story, and they can share it when they want, how they want, every time.
• Set guidance for speakers based on your needs and best practices. We should always practice safety, no matter the story.
• If you cannot offer them directly, share supportive resources. Never assume that you are leaving someone as whole as when you found them. If you are diving into their pain, you should provide ways to heal the wounds you reopen.
• Follow up as a human. It only takes a few seconds to send a thoughtful thank-you email. Better yet, take a few moments to write a note of gratitude.

What would you add to the list?

It’s time the field remembered that the work wouldn’t exist without us. The work should serve us in every way we need. Otherwise, what is the work achieving?