BLOG PODS #16 - Experts by Experience: Why It's Not Really a Thing
INTRODUCTION
Earlier this week, I had an interesting conversation with a friend and colleague from the States. We were discussing a training session I'll be delivering early next year. The idea for the training stemmed from a series of posts I wrote before the summer about my journey with ADHD. Those posts were deeply personal, chronicling my experiences with the realisation, assessment, and subsequent treatment of my condition.
My friend was incredibly kind and supportive about the posts. During our conversation, he invited me to train on the subject, mentioning that I clearly had "some expertise" in the area.
This comment got me thinking...
Lived experience
If, like me, you're an avid reader, you've probably noticed the increasing number of people writing about their ‘lived experience.’ My own posts on ADHD are part of this growing trend — I’ve been through something (still going through it, actually!), and I wrote about it to help others who might find themselves in similar situations.
So far, so good.
The distinction I’m drawing, though, is that I’ve started to notice a growing number of people marketing themselves as ‘experts by experience’ (sometimes referred to as EBEs or EbEs in the literature). These individuals often offer training, consultation, and support services, all based on what they’ve personally been through. Now, don’t get me wrong — this can be incredibly valuable. There’s absolutely a place for people to share their lived experiences in a way that helps others.
But the term ‘expert by experience’ gives me pause.
Expert? Really, though...?
I’m not entirely convinced that having gone through something automatically makes someone an expert.
I absolutely believe that lived experience makes someone an expert in their own journey — in the unique, subjective experience of having walked that particular road. So yes, they’re an expert in what they went through. That much is undeniable.
But the term ‘expert by experience’ seems to imply that having gone through a specific situation makes someone an expert in that issue more broadly. This, I think, is a bit of a stretch.
It’s akin to saying that because I spent three days climbing Mont Blanc in the French Alps back in 1985, I am now an expert on mountains and mountaineering.
But there are a few issues with this line of thinking:
1. Every situation is not the same
Climbing Mont Blanc doesn’t make me an expert on Snowdon or Everest. In fact, one could argue that it doesn’t even make me an expert on Mont Blanc itself! I climbed it during the summer, which presents vastly different conditions than a winter ascent. Additionally, I wasn’t alone; I was part of a large group, accompanied by three experienced mountain guides — each of whom had summited the mountain dozens, if not hundreds, of times. Is my ‘expertise’ on par with theirs? Hardly.
2. Every person is not the same
One of my climbing companions had a sinus condition that caused him to suffer severe nosebleeds at high altitudes. This isn’t something I experienced, so his journey up Mont Blanc was markedly different from mine. While I might claim some level of expertise about my own climb, I can’t claim expertise on altitude-related nosebleeds, nor on the frustration of attempting and failing to summit half a dozen times over several years, as he did. So, can I really say I’m an expert in the broader sense? I’m not so sure.
3. Every day is not the same
In June 1985, the summer climbing conditions in the Chamonix Valley were near perfect. We had several days of clear blue skies, and freezing overnight temperatures that ensured crisp snow and solid ice for climbing. But had we attempted the ascent during a different year, we might have faced entirely different conditions.
During my time in the area, I witnessed more than a dozen people being airlifted off the mountain. Some were injured badly, some less so, and tragically, a few had passed away. Their experiences of Mont Blanc were drastically different from mine, for obvious reasons.
4. Every body is not the same
Even within my group, we experienced the climb in varied ways. Despite being of similar height, build, and age, the three of us friends reacted very differently to the conditions. Some suffered from fatigue, others from snow blindness or altitude sickness. Our physical responses to the same situation were wildly different.
One of my friends took to the climb with relative ease, as if he were born for it. Another struggled at almost every stage. Yet another was somewhere in between, confronting a few challenges but managing fairly well overall. Even though we climbed the same mountain at the same time, our experiences were as different as night and day.
A plea for humility
To me, it’s clear that we are all experts in our own subjective experiences. But that’s where our expertise ends.
Yes, lived experience gives us insight and understanding into the type of situation we’ve been through. It allows us to offer support, empathy, and guidance to those who are going through something similar. But does it make us ‘experts’? I don’t think so.
One journey, through one specific situation, in one body, over one period of time, surely cannot be extrapolated into broad expertise that applies to everyone? Our subjective experience doesn’t provide objective truths on the issue for others.
I believe we need a bit more humility than that.
My journey through ADHD has taught me a lot, and I’ve shared my insights through blogging in the hope that it helps others. But I’m not, and probably never will be, an ADHD expert. That’s a title I’m not comfortable with.
Do I have expertise? Yes. But that expertise comes from 30+ years of working with children and adults with ADHD, from collaborating with clinicians who really are experts, and from devouring books and studies on the topic. It does not come from the fact that I have ADHD myself.
Please, correct me if you ever hear me say otherwise!
‘Lived experience’ is better
So, can I make a case for retiring the term ‘expert by experience’?
I’ve been in a few situations where people with lived experience have contributed to project planning, service design, and other professional settings. And their input has been valuable. Sometimes really valuable.
What isn’t helpful, however, is when professionals defer to someone purely based on their lived experience, despite the fact that the professional likely has a far broader expertise. Years of professional practice, formal qualifications and the experience of working with countless service users across diverse scenarios — that’s what makes someone an expert.
One person’s lived experience can’t — and shouldn’t — be equated with that kind of expertise.
So let’s call it what it is: ‘people with lived experience.’
FINAL THOUGHTS
After my conversation with my colleague in the States, I decided to go ahead with the ADHD training. But I made it clear upfront that I don’t consider myself an expert on ADHD.
I’m not a psychiatrist, psychologist or certified ADHD coach. I’m just a person with ADHD — that alone doesn’t make me an expert.
Can I add value? Will my training be helpful? Can my experiences assist others on their journey? Absolutely. At least, I certainly hope so.
Let’s encourage those who have been through difficult experiences — whether in the care system, surviving abuse, or managing mental illness — to share their stories and advocate for change. Their voices are essential.
But let’s be cautious of the term ‘expert by experience.’ In my view, that’s not a thing.
See you in the next one.
More information:
Some of these are ‘affiliate links’ - this means I get a small reward if you buy something, but it won’t cost you anything extra!
* PAPER: ‘To Be Treated as Human’ - a good example of groups of people with lived experience making a great contribution to MH nursing education. Shame about the use of EBE throughout... (link)
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