The Damage Doesn’t End When the Drugs Do: Diana Rose on Psychiatry’s Long Shadow

Diana Rose is an honorary distinguished professor at the Australian National University. She has also served as a Professor of User-Led Research and as Director of the Service User Research Enterprise (SURE) at King’s College London. She has been associated with multiple research programs at the Institute of Psychiatry, Psychology and Neuroscience.

Rose’s own experience with psychiatry has informed much of her academic work. She is someone with lived experience of madness, a service-user, and a survivor. In a previous interview, we discussed her pathbreaking work on user-led research, which values the knowledge of people with lived experience.

Since that interview, Rose has been diagnosed with drug-induced Parkinsonism caused by the scores of neuroleptics she was put on over the years. In this rather intimate interview, we will discuss her life, her struggles, and how other patients had better knowledge about treatment adverse effects than most practitioners. We will also cover how, contrary to popular belief, psychiatric drugs have continuing adverse effects even years after stopping them.

The transcript below is the result of both an audio interview and email correspondence. It has been edited for length and clarity.

Ayurdhi Dhar: Could you tell us a little bit about your work, your positions in academia, and your background?

Diana Rose: I am both an academic and a community mental health patient. Two things have preoccupied me: the study of language and representation, including sign language, because I grew up in a community with a lot of deaf children and adults. The other is the focus on marginalized groups of every kind. I am still taken aback by how invisible the mad are, even in the panopticon of critical theory that exists around decolonialism, feminism, gay pride, and queer theory.

 

Dhar: You are an academic, a researcher, and a writer, and we covered these parts of your life in our last interview, but this one is more personal. Let’s begin at the beginning. Could you tell us a little bit about your struggles with mental health, your life?

Rose: I wasn’t brought up in a fully capitalist society. I come from the north of Scotland, and my father was a poultry butcher; about a third of our consumption was bartered. It was also a very, at that point, patriarchal, xenophobic, and homophobic society.

I wanted to get out, and the best way of doing that was to go to university. The madness and the academia came together very early — I sat the finals of my first degree in a mental hospital.

During my first breakdown, I was living in a Laird Estate. There were 10 of us living in this house. I used to take my dog for a walk every night, about 5 o’clock. I began to see things in the trees as white shapes. They got bigger, and they started to speak to me, and I didn’t really know what was going on.

My family of origin was around one night, and we had bottled gas, which is cooking gas that comes in big metal containers. I turned on the gas, didn’t light it, and struck my head in. So, they called psychs, and they came not with a prescription pad but with bottles of pills, and said, “Stay in your bedroom and take these.” It was Mellaril, which is now off the market. I had no idea why I was taking them, and I slept most of the time.

 

Dhar: Do you remember what the effects of the treatment you were given at the beginning were?

Rose: I slept. People in the house would come and talk to me, and then I would drift off. So, I didn’t take my finals, but I stayed. I came to London, did some stuff, went back, and my father had me sectioned – involuntarily committed. I think I’m one of the only two people that I know who has had insulin coma therapy.

 

Dhar: Would you be willing to tell us a little bit about it? People don’t even know about it anymore. It’s relegated to ‘history of psychiatry’ chapters in books. Did they tell you what to expect from this “therapy”?

Rose: No, the night staff just came and gave me an injection as they went off shift. What happened after I have no idea. Then I was given a glass of orange juice, and I was very sleepy. But then the psychiatrist, and this is a bit crazy, filled me full of Ritalin so that I could do some studying.

One night, I asked if I could skip the Insulin Coma treatment. I was exhausted. The day staff agreed but forgot to inform the night staff. So, I got the insulin injection from the night staff, but no glucose from the day staff, who thought I had not had the injection. That produced the wildest visual hallucinations imaginable, really terrifying. They finally worked out what was going on and stopped it with a glucose infusion, I think.

 

Dhar: Ritalin on one side, and these really heavy tranquilizers on the other side, that is quite a cocktail. Did the doctors tell you anything about the adverse effects of the drugs?

Rose: They told me nothing about negative effects. I was very angry because they were preventing me from studying. That was 1970, and in the intervening period, I must have had about 20 different neuroleptics, and on the whole, I learned about negative effects from other patients.

I remember I couldn’t sit still. I didn’t know why I couldn’t sit still, and somebody said to me, “Do you take those blue pills, and Haloperidol? Haloperidol makes you restless.” The information did not come from professionals. The information came from other people who were in the hospital with you, or later on, when I got involved in activism, it came from there.

 

Dhar: For the longest time, we disregarded all this information around adverse effects and withdrawal when it came from the patients. In all these decades of taking these different neuroleptics, was there never a practitioner who said, “Oh my God, the adverse effects are terrible!” Did you ever meet a practitioner who accepted or validated your experience?

Rose: No, it was taken for granted. I do ask myself, why did I keep swallowing them? Entirely contradictory thing to do, but everybody did, except people who were really, really anti-medication. But this new finding, that drugs you took years ago could have awful effects much later, was not known. I learned about tardive dyskinesia, which I saw for the first time when I went to my first user group meeting.

It was really shocking — people who had been in the old hospital for like 30 years, and they couldn’t speak because of the way in which chlorpromazine had affected their faces. It was terrible!

But we heard it was a one-off, that they had just been overdosed with this medication for so long they had had these effects. Not that perhaps it was a harbinger of things to come.

 

Dhar: I remember you said in the last interview that working with survivor groups saved your life. Could you tell us a little bit about it, how you found them, and your experience with them?

Rose: I was a lecturer for eight years in what was then a polytechnic. Then things got very out of hand, and I started to behave poorly in lectures, and I was medically retired. I was living on benefits and dozing around, and my partner was fed up with this. He saw an advert in a magazine called Time Out for a group called Camden Mental Health Consortium, which is for people who had been in psychiatric hospitals.

I went, and it really was amazing. I, at the time, was self-harming quite a lot. In the hospitals, the way they treat people who have caused pain to themselves is just awful — they stitch you up without an anesthetic to teach you a lesson.

They know it hurts. It happened to me in the 1980s, but it still happens – “You’re manipulative. You’re attention-seeking. You’re wasting our time.”

 

Dhar: Did you say they stitch you up without anesthesia?

Rose: Yes.

 

Dhar: My God! I had to ask again because I thought I misheard you. It’s sadistic. The way the system operates has a certain level of sadism in it.

Rose: They thought we were the scum of the earth, that we needed punishing, and my diagnosis at that point was borderline personality disorder. I went to this user group meeting, and a woman was standing there talking about such treatment in the ER and saying it was an “abuse of my civil rights.” I did a sort of mental flip. I had half believed what the ER nurses said, and here was a completely different way to think about it. Some people call it an ‘epiphany.’

 

Dhar: Tell us about how you are now, and I know that you were recently diagnosed with drug-induced Parkinsonism. Could you tell us about drug-induced Parkinsonism and what has led to this?

Rose: The literature said it is extremely difficult to distinguish between Parkinsonism as a regular illness and secondary Parkinsonism. I read the literature, and it was awful. I wanted to find out more about what the psychiatrists knew. Psychiatrists don’t like patients who know literature.

 

Dhar: Could you tell us a little bit about it what drug-induced Parkinsonism is?

Rose: Parkinsonism is generally thought to be caused mainly by the degradation of the dopamine cells in the brainstem. But the neuroleptics can cause that degradation as well, and therefore, it mimics the symptoms of Parkinsonism, but it’s actually induced by something (the neuroleptic) rather than occurring naturally in some people.

 

Dhar: Let me ask you a more personal question. What’s your life like right now? How has this affected you in your daily life? Can you tell us a little bit about the symptoms that you are facing and how they have restricted your life?

Rose: There used to be a joke about me that I was unkillable because I had been face-to-face with death so often and come through it. You see, Parkinson’s is one of two long-term conditions I have. The other one is pain. Basically, it’s extremely difficult. I have lived here with my husband in France since we retired, and he’s become my caretaker. It was all very messy for a long time, but now we’ve been put in touch with somebody very, very good.

We’re organizing help so he will have more time for himself. There’s very little that I can do. I am down here in the study today for a few hours. The rest of the time, I’m in bed. There is no drug treatment for drug-induced Parkinson’s, and what you have to do is move – physiotherapy. But the physiotherapy sparks lots of pain. The treatment that is advocated doesn’t work. So yeah, it’s not good. I try to write…

I need help with washing and dressing. It varies from just light help to bed baths! I was once paralysed for 2 months. Then one day, I just got up and started walking without thinking about it. Not proper walking, but getting around on one floor. Nobody can explain it. I can’t do any housework at all, as standing for more than two minutes is hell. We’ve had help all year. I won’t go into what this does to a relationship, but you can imagine.

Of course, I am privileged. I know that. We can afford all the help we need.  But money isn’t everything. I know even saying that is a luxury. But it’s not exactly what we had in mind for retirement! These things have become embedded in this new life. I take them for granted, which means taking for granted other people seeing you naked, observing you peeing, and cleaning up after “accidents.” I should feel humiliated, but I just take it all as it comes. Psychiatry is excellent schooling for this.

 

Dhar: Psychiatry being a schooling in humiliation is something I never thought about…

Rose: You really never thought about psychiatry as a schooling in humiliation? Of course, it is! It makes you think about all the things that are wrong with you as a normal human being.

Pain medicine, in fact, most chronic conditions, have an irrevocable focus on what you CAN’T do. The advice on the ground is actually to exaggerate your shortcomings, which may make material sense but not psychological sense. And if you “fail” at the attempts to remedy these incapacities, you are “treatment resistant,” “non-compliant,” or just plain difficult—nothing to do with them or their “treatments”, of course. And by the way, questionnaires for welfare benefits do the same thing.

 

Dhar: People have been told repeatedly that there are now second-generation neuroleptics (atypicals) that are far better than the first-generation ones, that the first-generation ones were terrible and will cause extra pyramidal side effects, but the second-generation ones (atypicals) are miraculous and lifesaving. But we know now they are not as benign as we were told. What’s your response to that?

Rose: Do you know the answer?

Dhar: I do. I’ve read Bob’s report, and I would like others to know.

Rose: It’s been found that people who only took atypicals or the new generation, or a mixture of atypicals and the old generation, are more likely to have what I have than people who only took the old ones.

Atypicals are worse. The incidence isn’t known, but what is known is that all people who have been identified with drug-induced Parkinsonism are far more likely to have been exposed to a new generation or a mixture of the new and the old than to just the old generation.

 

Dhar: When I teach my students about antidepressants, protracted withdrawal, and their dubious effectiveness, my students always ask me, “Why don’t more people know about this? Why are we still giving them to people? Why do we know so many people who are taking them?” They’re genuinely perplexed.

Rose: I have a friend who takes one of the SSRIs, and she said to me, “I guess I’ll be on it for life.” I said, “Does it make you feel less depressed”? She said, “Not really, but it helps me sleep. It’s like a side effect.” She takes it because one of the side effects is very helpful for her. They can be helpful.

 

Dhar: I read somewhere that drugs don’t have side effects. They just have effects. Then what you want is the main effect, and then everything else we call a side effect.

Rose: That’s absolutely critical! I remember we discussed this in our user group in the 80s, that drugs don’t have main effects and side effects. Drugs just have effects. The idea of a main effect and side effects is a medical judgment. But it also means that all the research goes on the main effect, and none of it goes on what are designated as the side effects. So, a drug doesn’t only target serotonin in the brain. When you come off, you feel sick because there’s so much serotonin in your gut!

But there’s something else that keeps this main effect / side effect distinction going. It is the design of Randomized Controlled Trials — the so-called Gold Standard way to study whether a substance, a drug, or a procedure “works”. For reasons that are basically statistical, you are forced to have one single outcome measure. You can collect information on other things, but they have a ‘secondary’ status. So, the single outcome is usually symptom reduction in the case of medications, and everything else is secondary.

What it means is that this main effect / side-effect distinction is built in. Plus, the average duration of these studies, which is about 8-10 weeks, almost guarantees that long-term side-effects will never be studied, may not even be ‘seen’! It might be, this is Nikolas’ view, that growing awareness is the result of closing the institutions. People my age who years ago would have been institutionalized for life are now, to a degree, out in the ‘community’ and are going to their General Practitioner with these kinds of issues.

 

Dhar: Also, we don’t study the harms caused by medication very well. You are shuttling between symptoms of Parkinsonism and debilitating pain. You had told me that you are livid, enraged, but also defeated. What is something we would want our listeners and our readers to know about these drugs?

Rose: I came off all psychiatric drugs before I left England in 2019. I did not know that they could have these effects in the long term. I thought side effects happened when you were taking the medications, not that they could induce permanent brain changes that were very, very difficult, if not impossible, to reverse. I came off of Olanzapine; it took me a year, and I was living with somebody who understood neuroscience, who understood that what looked like a relapse was actually a homeostatic rebalancing. But I didn’t know that this kind of thing could happen.

I really feel like an idiot because I should have known! I thought I knew! If anybody should have known, I should have known.

 

Dhar: You are a researcher, an academic, an educated person, and you have a supportive, equally educated partner. You are so hard on yourself for not knowing, but I wonder what chance a regular person has when they’re put on these drugs.

What is something a layperson should know or ask about when they go to their practitioner or their psychiatrist? How can they advocate for themselves?

Rose: You’re assuming that all psychiatrists know about this.

I am quite suspicious of the “patients should be fully informed ” approach if it assumes that these pompous asses, as you put it, know everything and are deliberately withholding it. Sure, they do that. But they are also quite ignorant, for example, our discussion about the appalling quality of much of the research. They act all-knowing, but they’re not. I learned what I know from other survivors, and it is actually better knowledge. It speaks to the epistemic value of our everyday narratives, including the horrors and humiliations that bother me.

That’s the problem with the research and the knowledge that is produced — it’s all focused on symptom reduction, on main effects, and not on what is called side effects. They might not get an answer from their physician or their psychiatrist, because that person might not know. Main effects get research attention, but effects that might occur 20 years later do not.

 

Dhar: I think the worst part is that if a person does read up and go to their practitioner, they would probably be seen as a nuisance.

Rose: Especially if you’re crazy already.

Dhar: You told me that your GP told you about polypharmacy and said that we don’t even know anymore which effects are what. I remember covering this for Mad in America about how polypharmacy and inappropriate medication use were a significant cause of death among the elderly in the U.S.

Rose: With polypharmacy, you’ve taken so many compounds that have so many interacting effects that nobody knows what’s influencing what, and so they don’t know what to do about it. They try everything, nothing works, and they say, “You’re incurable.”

 

Dhar: It’s always “you’re incurable, you’re treatment resistant, you’re treatment non-compliant.” Are there any other things you would like to add that I haven’t asked you about?

Rose: I don’t want to come across as 100% anti-antipsychotic. They can be OK in a very short term, like a week or two, so you can start to talk about what’s happening to you. But not for 20, 40, 50 years.

 

Dhar: Recently, at Mad in South Asia, we did a seminar on psychiatric drugs, adverse effects, and withdrawal. A critical psychiatrist conducted it, and he said, “Think of psychiatric drugs like those old big TVs. Taking psychiatric drugs is like hitting the TV when it’s not working. Sometimes it will work. It will fix it for a bit, and we don’t know why. In the long run, you are messing it up even further. It’s not fixing the problem at all.”

I thought that was a pretty decent analogy, for there is some relief for some people. Maybe what would be important is giving people what we call true, good information. But as you said, information comes from research, and the research isn’t good.

Rose: Well, that links us back nicely to my first interview with you, Ayurdhi.

What counts as “true, good information”? It’s not an ‘academic’ question these days with the likes of Senator Kennedy coming out with the opposite — COVID vaccines causing autism, climate change denial, and so on. I know he is wrong, but I am not happy with what counts as “right” and why it is taken to be “right.” Research is light years away from the everyday which is why I’m always pushing the line that patient ‘knowledges’ are indispensable. So far, very few are listening!

 

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