Editorial Note: Laurie Oakley has recently brought out a book, Crazy And It Was, that gives many vivid illustrations of the problems of coping with healthcare systems, especially mental healthcare systems. Her account of what it’s like to deal with a doctor who just isn’t listening was particularly compelling. We asked her to give some hints of the kinds of problems covered in more detail in the book here.
Recently, one of David Healy’s installments in his Persecution series was described by a fellow psychiatrist as being “over-the-top,” albeit worth checking out. In the series, Dr. Healy has highlighted, among other things, the reality many of us face when trying to communicate to our doctors what we have experienced while taking certain medications. He uses the term heretic to describe how patients and doctors alike are viewed within medical and mental health systems whenever we give voice to narratives that might suggest the existence of widespread pharmaceutical harms.
I never set out to become a medical heretic. That job was ascribed to me by certain pharmaceuticals that are said to work wonders for the majority of the human race, but not for me: miracle drugs like the SSRI anti-depressants and the ever safe benzodiazepines. So when I described to doctors what had happened to me while on these medications, most stared at me as if I’d just grown a second head. My report, it seemed, was over-the-top.
One doctor congratulated me for kicking my “benzo habit,” even though I had told her I’d taken only a small dose as prescribed by my doctor. When I tried to explain how tolerance withdrawal symptoms had been repeatedly misdiagnosed as somatization, and for that I had been given more psychiatric drugs over a period of several years while my physical and mental health deteriorated, she may as well have plugged her ears and shouted, la la la la la! Instead, she said, “uh huh,” before opening my chart and recording my history with benzodiazepines in the illicit drug use category.
After she left the agency, I started seeing a different doctor who listened to my stories in utter amazement. My experience was unlike anything he had ever heard in his many years of prescribing psychotropic medications. When I suggested that my ongoing, chronic insomnia might be a residual effect from having been prescribed a benzodiazepine for eight full years, he responded by saying there was no way of knowing, and at one point even asked, if the benzodiazepine had helped me to sleep, why didn’t I just keep taking it?
Time for a new doctor. I jumped from the frying pan into the fire. This new psychiatrist had a penchant for sighing and rarely looked at me. He mostly just shuffled papers and wrote things down. He wasn’t interested in knowing what my experiences with medications had been, my complex history, or anything else about me. He was interested in prescribing a certain medication for my insomnia which he pushed even after I had educated myself about side-effects and informed him I didn’t want to risk it. I did finally end up trying the medicine, which I didn’t like and didn’t continue. Then his impatience with me turned into disgust as he no doubt thought my fear of taking medications was irrational. He went on to tell me that millions of dollars and years of study went into the research and development of the drugs he prescribed and he was confident that they were safe. As for my story, it would have to wait for another day. He had no ears for it. It was over-the-top.
In this upside-down, crazy world, it is not over-the-top for doctors to prescribe freshly patented, old drugs—medicines that have been given new names by pharmaceutical companies thereby making it unlikely that people will recall the dangers they might have heard about them. It is not over-the-top to have your side-effects misdiagnosed by dozens of doctors over a period of years while you’re taking what is considered a well-known, well-studied medication. It is not even over-the-top for doctors to get angry and defensive, to refuse to listen, and to disbelieve or fail to report it when you tell them your medications hurt you.
Over-the-top is a specially reserved diagnosis for those of us who have been fortunate to recognize when our drug is the problem. It is a status relegated only to we who have managed to survive well enough to tell the damage our medications caused, and for any doctor crazy enough to believe us.
Instead of resisting this diagnosis, I suggest we embrace it. If you think you or someone you love may be over-the-top, go ahead—talk to your doctor—and then decide on some kind of action. Hold your head high and speak your truth boldly, keeping in mind that almost all game changers once fit this description.
Susan B. Anthony was over-the-top (and arrested) for voting in the 1872 US Presidential election when it was still unlawful for a woman to do so. Her actions furthered the cause of voting rights for women and blacks in America.
In 1955, Rosa Parks had the audacity to remain seated in the colored section of a Montgomery bus rather than obey the driver’s command to get up for a white man. Her over-the-top actions contributed to the end of the discriminatory Jim Crow laws in the Southern United States, and she was later named the mother of the freedom movement.
Ed Roberts, who had to use a wheelchair and iron lung after surviving polio, was told by California’s Department of Rehabilitation in 1962 that it was over-the-top for him to expect to ever hold down a job. He nevertheless fought for the assistance he needed to receive a college education and ended up attending the University of California at Berkeley. Afterward, he landed a job as director of the very Department of Rehabilitation that had claimed he would never work, and he is now internationally recognized as the father of the independent living movement for people with disabilities.
As individuals living in societies that continually turn a blind eye to the ways in which medical and mental health care systems are delivering unsafe treatments to unsuspecting patients, where the corporate pharmaceutical corruption behind these harmful treatments is rarely understood or acknowledged by the physicians and pharmacists who deliver them, and where a majority of doctors fail to recognize the impossibility of rendering true informed consent, we would do well to take our lessons from these pages of history. If the actions of people like Susan B. Anthony, Rosa Parks, and Ed Roberts have taught us anything, it is that for things to change, over-the-top is exactly what it will take.
My family were plunged into a pharmaceutical nightmare through my son’s withdrawal from a prescription drug. The one good thing that’s come out of it is that it has opened our eyes to the murky world of pharma and we no longer blindly believe that the Doctor is always right. I was very proud of my Mum. She is diabetic and was put on statins even though her cholesterol was only slightly high. Within the first week of going on them she started to feel down. After a few weeks she felt down right depressed. Her Doctor wouldn’t seem to accept that it was anything to do with the statins. She started to have suicidal feelings and told me she kept having urges to go and lie down on the train tracks just to put an end to how she was feeling. She knew it was the statins so she went to the Doctor and told him in no uncertain terms that she knew how she felt, she knew it was the statins and she would no longer be needing a repeat for them because she wasn’t going to take them. Within 2 days of stopping them her mood lifted and she felt back to her normal self.
Thank you for your article. I should be happy that I’m alive after surviving the last ten years of tolerance withdrawals from my Klonopin, and yes, then treated with more drugs to treat the many disabling symptoms from it: migraines, insomnia, increased anxiety, fear, agoraphobia, chronic diarrhea, ear problems, depression, increased alcohol use, and suicide attempts to deal with all this, only I’m not happy. The final blow while my psychiatrist is attempting to fix my ‘chemically induced’ brain after 35 years of brainwashing was when my community mental healthcare workers, all 4 of them, informed me it was ‘just fine’ to abruptly stop taking Klonopin after more than 10 + years on them. With not one mention of ONE single withdrawal symptom I may experience while I’m home alone trying desperately to keep myself for alive for 6 weeks between the hallucinations, psychosis & seizures. Wow, I barely survived that one. And they never mention what I may experience quitting my Effexor, Trazodone & Lithium cold turkey because I thought I has suffered from Serotonin Syndrome when they would tell me nothing different. I was denied access to my psychiatrist at this time. Told I had to wait until my scheduled appointment in 3 weeks when I told them I wasn’t going to last that long. And I didn’t. In a state of pure klonopin induced psychosis I got out my sharpest kitchen knife and went to work on my right leg. While being refused access to my psychiatrist I ended up in the Psych ward and the ER, treated with benzo’s. The very drug that was causing all my problems. And still with no support what so ever. I’m not happy. In fact, I became so suicidal & homicidal while enduring the Effexor, Trazodone, & Lithium withdrawals just weeks past my Klonopin withdrawal that it is a miracle, and I mean, a miracle I did not kill someone because it was on the table for me every single day for 5 months. If a psychiatrist ever wanted to label me ‘crazy’, it was while enduring these withdrawals. I became completely insane. Drug free today, I’m trying to find this mental illness they told me about over 35 years ago, and I can’t find it. Now I just have severe neurological brain impairment, but I am alive. For what ever that is worth.