Lived Experience: In qualitative phenomenological research, lived experience refers to a representation of the experiences and choices of a given person, and the knowledge that they gain from these experiences and choices. In short, you have actually lived through the experience in question.
Expert by experience: a person who has personal, lived experience of a health issue, and has continued to educate themselves outside of their own experience to the point where they can advocate, educate, and compliment the medical field.
Well, that’s my definition anyway. And it is what I class myself and many of my colleagues in the eating disorder field as. Not just people who have recovered from a restrictive eating disorder themselves, but many of the parents who have refed and supported a child through recovery then become experts. While it may seem ballsy to say it, I do consider myself no less of an expert than anyone who has a medical degree when it comes to the subject of eating disorders. Not only do I have my own recovery experience, but I have at this point worked with hundreds of individuals in recovery. I’ve educated myself far beyond my own recovery and read far beyond what most experts by education read.
Mental Health is … lagging
I think that one thing most of us can agree on is that mental health in general is a field of medicine that is, for lack of a better term, lagging. This lag is often blamed on mental health not being give priority by society/culture, but I don’t think that’s the only reason so many people are failed by the system. I think the problem is that the system is fundamentally flawed, because it was written by the wrong people. I’m talking about eating disorder treatment for certain, because that is what I know. But I suspect I this may also apply to many fields of mental health.
The textbooks, the educational materials, the guidelines, the DSM … all of it for the most part written by people who had no lived experience of what they were writing about. Surely if we take a step back and think about this, we’ve missed the mark somewhere?
That’s like a chef writing a cookbook about foods they have never tasted. In theory it could work, but in practice it would probably taste like shit. Any good cook knows one has to taste the food. Yet, this cookbook got published, and then it got used as the basis for all cookbooks to come. It got used in cooking schools. The cooking exams were based on it. And everyone in the word was wondering why the food never tasted quite right, but at the same time nobody knew how to challenge it. Nobody knew quite where it had all gone wrong.
This bad tasting food, by the way, is not the fault of the people cooking it at this point. They are only doing what they have been taught. They are doing what their profession believes to be “the way.” I by no means want to imply that any individual health care professional is personally at fault. They too, in a sense, have been misguided by a system that was never fully representing the patient. How could it have been fully representing the patient if the patients were never part of the writing of it?
When we treat people according to theory only, we are treating people hypothetically. If we are treating people hypothetically, we are not really treating them.
Am I saying the lunatics should take over the asylum? I guess what I am saying, is that the idea that people with mental health problems are lunatics is part of the problem.
“People with mental health problems” are all of us. If you have a body, you have or will have some degree of mental health problems. In the same way all people at some stage experience physical health problems, we all experience mental health problems. Diagnosis or not. So the first step is to stop pretending that mental health issues only affect “other people.”
The next step, is rather than looking down upon people who are brave enough to receive diagnosis, we learn from them. We allow them to be the teacher, and an equal and respected partner in our learning. Not the, “I’m the doctor and you’re the nutcase” attitude that many of us are so sick of dealing with. Furthermore, fully recovered individuals are a fountain of information. We can tell you what worked. What didn’t work. We can tell you why. We can describe, explain, and colour in a way that no textbook ever will.
Lived experience should shape treatment
Lived experience should shape treatment. At the moment, in some cases, I think we have this the wrong way around. The theory is shaping treatment, and people who don’t fit the theory – often the majority of cases – are written off as problematic.
Then we wonder why people don’t get better. Then we wonder why caregivers begin to suffer with their own mental health problems. Then we wonder why so many mental health patients are just so fucking noncompliant.
Where do we learn? Who do we learn from?
Now that the internet has allowed us to socalise with people outside of our geographical region, peer support has never been so strong. Peer support for patients, but also peer support for family and caregivers. And there is a reason people gravitate towards it. That reason is REAL FUCKING LIFE. It isn’t “go home and let me know how you feel in a week.” It isn’t “Go home and work out how to get your kid to eat.” It is real time, real deal, I have been there, I have felt that, and here’s how it goes, life.
Peer support tells you what to expect. It reassures you that you are not alone in your experience. It gives you a path to recovery in many cases. Peer support commiserates. Peer support cares — because it has been there and it knows. Most people with mental health problems have at some point discovered peer support, and many have exclaimed “thank God” when they do. At last, a community that knows.
You know what else peers can do? Educate.
Experts by experience
Not all people who recover and then support others become professionals in their field. Many jump in and out, help when they are needed, or when they have the time. They go off and lead full and exciting lives while their patient or caregiver experience simmers in the background. Never forgotten, but not the spotlight any more either. That is a wonderful thing. Some of us choose to make our experience our life’s work. Some of us become professional educators who have so very much to offer the treatment field. This is also a wonderful thing.
Yet many treatment providers seem to shun or shy from experts by experience. Maybe because it threatens what the textbook says. Maybe because they feel insecure about taking the seat of the student, with (ex-)patients as the teachers. But here is the fantastic thing about experts by lived experience. We can support treatment professionals too. Yes, you can learn also! We can teach you too. Most of us are begging to be able to do so because we know what the difference a “woke” treatment professional can make.
Yeah. I said “woke” treatment professional. I’m going to define that, as a treatment professional who isn’t afraid of learning from lived experience. A treatment professional who respects the expert by experience and sees the value of listening and learning from real life. These “woke” treatment professionals are gold-dust, and they are the ones don’t hesitate to refer people to. Because they treat people in the real world, not hypothetically.