“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.” —Diana Rose
A few months ago when I interviewed Diana Rose, she said this to me with gut-wrenching humour that was so characteristic of her style. Diana Rose recently passed away and I remember her for her brutal honesty, her path-breaking work in service-user led research, and sadly, her pain.
Diana in her last interview was not shy of discussing the pain and devastation psychiatric treatment caused her over the years. As I write a tribute to her today, I do not want to paint a one-sided picture of brilliance and laurels which eclipse her true experience.
Of course she was brilliant. In her time at King’s College London, Diana was the first and only professor of user-led research in the world, and Director of the IoPPN’s Service User Research Enterprise (SURE). In 2003, she authored a phenomenal paper on patient experience of electroconvulsive treatment. In the UK, rates of people receiving ECT have since dropped from 11,000 to 2,000 a year, and her work was partly responsible for that. That said, she told me many people hated the paper, the BMJ which published it decided not to include testimonies, and the Royal College of Psychiatry on their website reduced her research to merely “some service users report…” I write this to remind us that her life was both a struggle and a success.
It was her personal experience as a patient, a survivor, an academic, an activist, and a researcher that made her intolerant of superfluous lip-service. She spoke against the co-option of service-user-led research, recovery movement, and of peer-support work—all of which had potential before they were mainstreamed. That’s what I liked so much about her—her refusal to accept half-baked solutions, knowing they often do more harm than good. Her activism had saved her life, she told me while remembering how it was another asylum patient, not the attendant nurse, who informed her that her restlessness was caused by haloperidol. Maybe she felt she owed other service-users the same honesty, and the same regard.
I interviewed her twice, three years apart, and in that time she had been diagnosed with drug-induced parkinsonism (DIP).
“Psychiatry is excellent schooling in humiliation,” she told me.
She loved studying language and had a way with it!
Diana wrote about the lies of the system better than anyone else I know. She was living with the consequences of these lies—clinicians saying that DIP was a one-off caused by wrong dosage, that atypicals were better, and that once you stopped the psychiatric drugs the side effects also stopped. This intractable search for truth and this zero tolerance for nonsense is why she hated the artificial distinction created between “side-effects” versus “main-effects” of drugs.
Diana was very aware that she was privileged—she had help, support, and love of a partner who understood her condition personally and academically. What we can learn from her is to not take less than the whole truth when we search for better ways to help people in distress, to be suspicious of false welcoming, to not join forces with those who pretend to help but only need survivor testimonies for added sparkle, and to ask for better research, truer allyship, and dignity in life and treatment.
A little diatribe: Yes, the only way I knew that I was taking too much of Zyprexa was when I stopped the Propanolol (for “anxiety” they said. It was blocking me from experiencing akathisia.) They had given me 30 mg of Zyprexa at the hospital and 900 mg of Lithium. I was also severely constipated. When I got home I wasn’t anxious anymore so I stopped the Propanolol. Immediate akathisia that didnt go away until I reduced the Zyprexa enough: from 30, to 20, and when I finally, with cooperation from a new doctor, got down to 7.5 it was more bearable.
It’s so horrible that service users don’t get listened to with seriousness. The drugs real effects are the main effects. There’s nothing “side” about it. The drugs deplete your store of vitamins, which cause “side” effects associated with low stores of those vitamins, they also make you dehydrated as well, and even drinking lots of water you can still feel thirsty. Thankfully, back home, after almost three weeks in a ward, my doctor reduced my dosage and gave me something that finally fixed the constipation (miralax). I was scared I might die.
Thank you for this nice article and tribute to a lady that did so much good and advocacy for us “service users”. Forgive me for the diatribe about my experience. I’m hoping and praying that having more of this information about the truth of what these drugs and so called treatments do to people comes out more so that less people are harmed in this way.
Thanks.
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