In her recent article in Sociology of Health & Illness, researcher Rajvinder Samra calls for a more inclusive understanding of lived experience research, one that captures not only how people explain their realities but also how they inhabit and represent them.
The article, Conceptualising Lived Experience in Mental Health Research: Problems, Insights and Implications, is written by Rajvinder Samra, a sociologist and person with lived experience of borderline personality disorder. Drawing on her personal and professional background, Samra calls for a shift from treating lived experience as a source of data to recognizing it as a distinct way of being in the world.
In most mental health research, “lived experience” is treated as a kind of knowledge, including a person’s account of what happened to them and what it means. But as Samra points out, this focus on knowledge, or the epistemic side of experience, leaves out how people actually live and feel their realities.
“Situating mental health lived experience so heavily within the epistemic domain comes with unresolved problems and tensions,” she writes. “The focus on epistemic knowledge and the trustworthiness and credibility of one’s account is at odds with the confusing experiences often associated with many forms of mental distress.”
“Furthermore, the idea of one’s account or testimony implies a sort of coherence and lack of confusing positions, which may not be the case for the lived experiencers, such as myself, who often hold (and live with) impossible or contradictory beliefs. In such cases, accessing one’s own perspectives and experiences may be phenomenologically very complex.”
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I can’t read the full article, but I need to report “lived experience” because, despite decades of being exposed to this mass pharmaceutical experimentation on people – I have been recently surprised.
I was misdiagnosed in perimenopause as having Bipolar Disorder. I had a hormonal migraine everyday for 12 years, resolving when I passed through menopause. I was treated as a preventative with anti seizure medications – all of which were problematic for me, and none that helped the headache. From my kitties Vet, I understand that these hormonal migraines are treated with hormones, these days. Water under the bridge. This was decades ago.
Part of the misdiagnosis justification was the hypothesis of kindling for Bipolar Disorder, like in Epilepsy. Also part, is there is something wrong with my younger brother’s brain (autism, schizophrenia, bipolar – unknown … he has some unusual concepts of the world – yet consistent across decades).
I became estranged from both my brothers around 5 years ago. For recreation, they were sitting on the phone, gossiping with each other about how crazy their sister was. I was attempting to regain agency, after quitting all psycho active drugs. My brothers weren’t any help at all. No surprise. Sometimes brothers are a lot of help. Sometimes not.
Fast forward to today. I succeeded. In a nutshell, I was misdiagnosed and anti seizure medications make me crazy. I am no longer estranged. My older brother had a very bad stroke, and I showed up to help arrange care for him. My younger brother, remains needing assistance with everyday living. Ironic. I am the last standing sibling that is cognitively intact.
My older brother is a wealthy man, and I have secured the best care, that money can buy, for him. I didn’t even know that such fancy places existed. He is paralyzed on his left side and his mind was affected by the stroke (brain injury). Most noticeable is this previously grumpy old man is now stuck on cheerful. I consider that a very lucky occurrence.
My older brother has become delusional – gangsters and earthquakes and towers broadcasting … You get the idea. Hey – I have been listening to alternate realities for the past 40 years – he was not distressed by this nonsense, it was conversational. We springboarded back and forth.
Then I hear they are trying this 78 year old man on antipsychotics (to their credit, they are also treating his UTI). What? Treating a man post stroke with a drug that has a black box warning about treating the elderly (Cardiovascular risks). And it was not about behavioral control.
https://pmc.ncbi.nlm.nih.gov/articles/PMC7888683/
https://pmc.ncbi.nlm.nih.gov/articles/PMC6204934/
“Limited benefits of existing treatment options also indicate that process of psychosis in post-stroke individuals might be different than psychosis in individuals with no stroke.”
I am advocating for my older brother. I assume he must be dying, because to try him on antipsychotics is a “Hail Mary”. It is medical experimentation, not science. There are considerable extra risks, including death, of having the elderly eat their medications. My beef is that my brother is happy enough with his alternate reality – leave him alone! It’s a different discussion if either his safety, or the staff’s safety is in question.
I needed to raise this issue. I apologize if this is inappropriate tacked on to this article. I definitely have lived experience, and I reported to the guardian the side effects of commonly prescribed antipsychotics in me (after all, this is my brother). Seroquel caused an irregular heartbeat in me – that no one ever cared about. I assume my brother is dying. They cannot acquire informed consent from him. He talks about mustangs and no one knows whether he is talking about horses or cars.
Just leave him alone in his last days, please. This guy is cheerful. Myself and the younger brother mostly remember him as a grumpy old man. What is wrong with psychiatrists? You guys ought to have to take the drugs you so easily prescribe to others.
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I would imagine your brother is talking about horses, given my Spiritual journey, and Biblical prophesy. And I agree with you, given my medical research findings regarding the iatrogenic effects of the antipsychotics / neuroleptics (see my prior comments on this website).
I, too, had to help keep a brother off these neurotoxins. I was successful, thankfully, and he’s doing well now.
Thank you for sharing your story, Hope. Please know in your heart that you’re doing the right thing … and we do all need hope and love.
By the way, even a small donation to MiA, will give you access to all MiA’s research and reporting … which most definitely tries to be truthful, thus is very important.
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Lived experience in tension to living the experience? Seemingly, to be knowledgeable while sifting through the experience with the hope of healing, then is there a space one realizes along or in dialogue with another who knows when to ask the question, that can address “stuckness”?
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How about we stop giving survivors little more than token input to check a “lived experience” checkbox and give them some actual representation and the power to say WE WANT TO ABOLISH PSYCHIATRY COMPLETELY.
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Oh Hope. You are absolutely right. Your bother as long as no concerns about walking off a lot and they have units for that if he is just ok with what is his now let him be. That was standard medical care in the county hospital I worked at. Pallative care might be an option. Find out why and what nurses and other staff think or know. Many times the aides have a good sense. Get to know them. Also it helps to bring something to staff. My mother’s family considered it a must at least once or a note. That is so hard to be dealing with all of the care concerns after you had your own walk. So happy you made it through and aren’t your brothers lucky to not be estranged with you now. You have a wisdom must people don’t have. Thanks for discussing this.
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This is where having both expertise and lived experience becomes crucial. Professional knowledge has its place, but we need to go beyond repeating accepted narratives and instead share lived experiences that offer real insight and solutions. If medical assessments rely on experts evaluating individuals — and yet individuals, through experience, become experts in their own right — then we need a 360-degree exchange of information. That way, when someone is vulnerable versus when they are lucid and grounded, they can reflect on what professionals did right and where they went wrong.
In this piece, the author shows clarity, logic, and self-awareness — they could easily analyze how the professionals failed them — yet they stop short of doing so. Why? Perhaps because such critique risks being labeled delusional, paranoid, or unprofessional for daring to say something that hasn’t been “validated by research.” But the deeper issue is this: I know what you know — academically and professionally — yet I also experience it directly, bodily, and personally. That combination of knowing is precisely what the system cannot easily contain.
Another foundational reason this level of analysis is discouraged is that it democratizes knowledge. If knowledge ultimately arises from the body, then when individuals question the standards, assessments, or treatments imposed by coercive systems, they expose how rules and procedures are actually constructed. Such embodied truth threatens the authority that defines who is allowed to speak and what counts as knowledge. Yet if a society blocks that kind of inquiry, it will lose knowledge to those who don’t. Understanding grows through openness, not control.
The author doesn’t need to re-expose their vulnerability to make this point — they could instead reveal how language itself fragments meaning. For example, professionals may label someone “paranoid” when that person is simply terrified of making a decision under extreme distress. Seen from another angle, this is not madness but a heightened form of risk perception — something all of us experience when we are lucid and afraid of consequence.
There is nothing disordered about that. The tragedy is that the system treats this natural response as pathology — an injury mistaken for a fault, a wound blamed on the one who bears it. And perhaps that is the true danger: that by calling the body’s wisdom delusion, we protect the hierarchy of expertise rather than the humanity of the person.
Ask any professional how they would personally deal with a paranoid state, and most will hesitate — because they’ve been trained to see paranoia as something that happens to others, not as a human response they too could experience. But how human can we be if we forget what it feels like to be unsure, to fear that a single decision might make things worse, to sense danger when others don’t?
What we call paranoia might simply be the body’s way of saying, “I don’t feel safe enough to choose.” It’s not madness — it’s distress made visible. Yet the system treats it as a symptom to suppress rather than a message to understand.
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