I think lived experience should shape this work.

Who better to notice the stuff other people miss? When someone is masking. When support technically exists but still feels heavy, awkward, or hard to engage with. When a person feels understood, or just quietly judged.

But having lived experience and knowing how to work with it safely are not the same thing, and that gap gets glossed over all the time.

I also think there is a lot of confusion about what lived experience actually means in this work. People talk about it like it explains itself. It doesn’t.

It is not just having been through something, being relatable, or recognising yourself in somebody else quickly.

Lived experience does not automatically give someone judgement, boundaries, or a sense of when something needs to be escalated instead of quietly carried.

My view on this has been shaped by more than one part of my life. I bring psychosocial recovery expertise, years of advocating alongside and for people with disability, and the very real experience of caring for multiple family members.

I am not coming at this from professional distance. I know what it is to live around family mental illness, trauma, anxiety, caregiving, recovery, and support systems that still leave you doing too much of the holding. I have also had to learn what happens when caring gets tangled up with responsibility, fear, guilt, and needing to be useful. So when I say lived experience needs structure, I am not saying it from the outside. I have had to learn, painfully and repeatedly, that love, insight, and survival skills still need boundaries around them.

Lived experience is not a side note in my work. It is part of why I notice what I notice. I also know what it is to receive support that exists on paper, but still leaves you carrying the load.

It has also made me learn, sometimes the hard way, that personal experience needs structure around it if it is going to help and not take over.

I have got this wrong before. Taking on too much. Feeling responsible for too much. Staying too close to something because it felt familiar. Thinking I understood what someone needed without slowing down enough to actually ask and check.

I have had to learn that care on its own is not enough. This work still asks for judgement, boundaries, and a willingness to keep questioning your own practice. I am not standing outside that learning, either.

A lot of people come into this work for good reasons. They care, they relate, and they want to be useful. That is not the part I am worried about.

I think a lot of lived experience workers are bringing something people genuinely need by noticing things other people miss, helping trust build faster, and helping people feel less alone.

The problem is that good intent does not stop people from overgiving, overidentifying, overpromising, staying too long, or holding things they were never meant to hold in the first place.

This gets handled too casually for how much it can affect people. Having lived experience is not the same as knowing how to work with it safely in this role.

Training needs to deal with the real risks: boundaries, self-disclosure, overidentifying, missed escalation, emotional over-responsibility, and knowing when your own experience is helping versus when it is starting to take over.

Most of the time, this is not the kind of thing people notice straight away.

A worker stays too close and starts holding emotional weight that is not theirs to hold. They avoid escalating because it feels disloyal, or cruel, or like they are betraying the person. They blur what belongs to them and what belongs to the participant.

From the outside, some of that can still look like care. That is why it gets missed.

Saying “I get it” or “I’ve been there too” can sound supportive, but it can also shift the centre of the conversation. The focus moves from their experience to your closeness to it. A person might feel recognised for a second, while still having less room for who they actually are and what this is like for them.

When the story feels familiar, people can stop asking enough questions. They can move too quickly into closeness, certainty, or responsibility.

That is often where burnout starts. Someone throws themselves in, gets close fast, and starts holding more than they can keep holding. It might work for a while. It can feel supportive before it starts becoming unsustainable. What looks like care can also be a worker getting pulled into being needed. Then the worker burns out, the support changes, and the participant is left navigating another shift they should never have had to carry.

The participant can end up carrying more of the worker than they ever should have to, and that should never be part of the job. They might finally trust, then lose consistency again. They might get another support relationship that starts strong and then drops away, or be left explaining themselves all over again after just starting to believe they might not have to.

For some people, it is not just losing a worker. It can stir up older stuff - not being worth staying for, not being properly understood, or not feeling safe to depend on anyone for long.

That kind of instability sticks. It can make trust in support a lot harder to rebuild next time.

People can feel when the support has started bending around the worker.

Caring is not the whole question here. It comes down to whether someone can use their own experience without letting it start running the room.

A lot of the ways this goes wrong do not look like obvious harm straight away. It can look like rescuing, guilt, blurred boundaries, missed escalation, or overavailability.

This is why I am careful about how lived experience is named in support work. Not because lived experience needs gatekeeping, and not because people need to have it all figured out before they begin. But once lived experience becomes part of someone’s role, it carries responsibility.

This work is not just about relating. It is about holding risk, distress, responsibility, and boundaries without making the other person carry part of it for you.

If lived experience is going to strengthen this sector, it cannot be treated like a shortcut around learning, supervision, or reflection. Ongoing learning should always be the goal if you want to offer people with disability better support without doing damage.

That can include lived experience training, good supervision, reflection, and honest feedback about how someone is using their experience in the work.

Being relatable is not the same as being safe to work with, and participants should not have to learn that the hard way.

At the same time, I do not want to understate how powerful lived experience can be when it is used well. I have seen lightbulb moments. I have seen people with very little trust soften because something familiar was named properly. I have seen first real connection happen because someone no longer felt like they had to explain the whole shape of their reality from scratch.

You can feel the difference when someone gets it without taking over the room. I’ve seen what changes when someone does not have to explain themselves from scratch, or fight to feel understood in the room.

Lived experience can change the work. It can help people feel seen, believed, and less alone. But living it is not the same as being ready to hold it for someone else.

If you want to build this into safer practice

Lived Experience Australia has training, webinars, learning resources, and lived experience workforce development. There is peer work study, like the Certificate IV in Mental Health Peer Work. There are also lived experience workforce frameworks coming out of places like NSW Health. This is a real practice area, and there are solid ways to keep learning it.

Places to start

• Lived Experience Australia: www.livedexperienceaustralia.com.au/
• Certificate IV in Mental Health Peer Work: https://training.gov.au/Training/Details/CHC43515
• NSW Health - Elevating Lived Experience Expertise: www.health.nsw.gov.au/towardszerosuicides/Pages/elevating-lived-experience-expertise.aspx

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Jess Schafer-Wilson
Co-Founder | Practice Lead | NDIS Systems, Recovery & Lived Experience - Heart Worx