Write on my tombstone

imageWrite on my tombstone ‘The medication killed me’ From an early age my daughter Luise displayed signs which would now almost certainly be recognized as being on the spectrum of Asperger’s Syndrome -at the light end. However, despite being seen by numbers of psychologists, neurologists and psychiatrists they struggled in the beginning to arrive at a diagnosis. Initially it was thought she suffered from ‘hidden epilepsy’ and she was given heavy anti-epilepsy mediation. She was only eleven years old. This was to be the beginning of Luise’s mental deterioration and my struggle with the psychiatric system in which we became inextricably caught up. This system – we should discover, unfortunately in the hard way- is one which pays no heed to the voice of the patient or the family. We experienced an over rigid, Kafkaesque bureaucracy which seems incapable of seeing patients as individuals with strengths as well as symptoms. I could just powerless watch my beloved daughter gradually succumbs to the devastating effects of the cocktail of drugs she is given in ever increasing doses, lengthy stays in psychiatric institutions, regular use of physical restraint and the use of the law to enforce this regime of ‘care’. As her state worsens she becomes filled with anxiety and experiences psychotic symptom, a situation which inevitably leads to a diagnosis of schizophrenia and more drugs, now to treat this new condition. No consideration is given to Luise’s pleadings regarding all the negative effects the drugs have on her or to my contention that Luise is acutely sensitive to psychiatric medication. Luise started hallucinating and showed other psychotic symptoms where before there were none. She had an incredible amount of side effects. Sleepiness and slowness. Weight gain(35 Kiloes). Parkinsonian side-effects. Strange movements of the face (tardive dyskinesia). Chronic vomiting, which led to ulcer and often terrible pain. Her menstruation stopped. A week after Luise started on neuroleptica she suffered from neuroleptic malignant syndrome (NMS), a medical emergency which leads to death if not promptly treated. Theneurological disorder is most often caused by an adverse reaction to neuroleptic. This happened August 1992 and was due to the high doses of neuroleptic/ antipsychotic drugs she was on. Eight and a half year earlier Luise was diagnosed, as mentioned above, with ‘hidden epilepsy’ and was given heavy anti-epilepsy medication for four years. This treatment had a disastrous impact on Luises life and health. She was given the drug in doses one would give to a stout adult (Luise being 11 years of age). Then in June 1988 Luise was admitted to hospital. Her third suicide attempt while she had been on anti-epileptica was the reason for this admission. Same ward as four years earlier, where Luise was diagnosed with ‘hidden epilepsy’ and heavily medicated for this disorder. But a new doctor had taken over, which altered the situation. According to the new specialist Luise didn’t suffer from ‘hidden epilepsia’ – never had. Doctors order was, that Luise should be treated as a normal girl and she should start living a normal life. So far so good. Just ‘a small detail, and sorry now I can’t help being a little sarcastic ‘. Luise had for five years been told how very ‘abnormal’ she was, and that the medication could make her ‘normal’. She had been in and out of a vast number of institutions and have had to talk to doctors/specialists again and again. The consultants all described carefully to her what she couldn’t do but was supposed to be capable of doing at her age. Among others she couldn’t hop on one foot, and that was because she had hidden epilepsia. Her malfunctions would be ‘mended’ through medication and that was the reason why the anti-epileptica was so important. Luise didn’t have normal schooling since she got the diagnose at the age of 11 years. Worst of all, she suffered from severe after-effect from the medication she had had for many years and that had stopped suddenly. Nobody in the health care system would help us with that. Now we were referred into the hands of the social authorities. All they could offer was that Luise saw a psychiatrist for her problems. I feared that a psychiatrist meeting would change Luises life and put her back to the Hell she just had come out of – fx. medication with anti-psychotic or anti-epileptic medicine and hospitalization and institutionalization. So now everything for Luise and me was about how to avoid any ‘medical help’. Back to 1992. Luise was admitted just for a ‘psychiatric evaluation’. She had at that time been without any medication for about four years. She was an adult and the evaluation was meant to measure among others where Luise needed help to get on with her life educational wise. Everything went wrong. She was given high doses of neuroleptica from day one, where she was meant to have no medication, just observation. After the Malignant neuroleptic syndrom, which I somehow would compare with a brain damage, Luise was extremely strange, not at all like the lovely daughter I used to know. I’ve later been told that this reaction is normal, but nobody told me that. On the contrary. I was told that Luise had a terrible aggravation of her disease. She was severely psychotic and had to be treated/medicated with antipsychotics so that this condition would not turn into a permanent state. I was scared to death. Was not able to think straight at all. And Luise was in a completely different world. This became the start of our second nightmare, that went on for years and then suddenly stopped. One should think that the NMS would have made the specialists rethink Luises treatment which still was heavy medication with psychotropics. Oh no! on the contrary. Luise was given still more medication and with different psychotropics (polyfarmacy). Luise kept showing more and more signs of not being able to tolerate the treatment. On top of all the side effects mentioned before she sometimes lost consciousness. When I deeply scared told her psychiatrist about this phenomenon he replied, that Luise just fainted to attract attention, that was a part of her disease. I had to give up. I had this strange feeling, that the psychiatrist saw me as a very irritating and disturbing person, who just obstructed his work. So he did everything to get rid of my intervention. He did not see me as the worried mother who was extremely worried to see how my daughter deteriorated. He didn’t see me as a person who actually new my daughter and as such could be a resource in his treatment of his patient. Luise had in 2003 a long time hospitalization in a special psychiatric hospital. She was transferred because the experts should find the right treatmen/ medication for her. In the chart notes on admission it is written that Luise should have stabilized and ajusted her medication.. After a stay on one year and a half her medication was reduced a lot, and she certainly was a lot better. The diagnoses of mental retardation given by her daily psychiatrist many years ago was taken away. This turn in treatment obviously didn’t please Luises daily psychiatrist . Maybe that the reason why he wrote in Luises charts, that she after her return had become increasingly psychotic, which was so very wrong. But that note could give him a plausible excuse for increasing her medication again. Which he did. When something is written down in the hospital records it becomes THE Truth. There is no account of side effects in Luises extensive records. The psychiatrists never accepted that Luise had such. Not that she hadn’t told him about her severe side effects. But he just took her words for waffle and catalogued her complaints as an aggravation of her disease. Luise tried almost every anti psychotic on the marked . She was often given a great number of different drugs at the time(polyfarmacy). She changed medication and doses constantly and did not get any better. Far from. She got increasingly worse. Why didn’t that fact ever make her psychiatrist reconsider his treatment approach. Luise deteriorated physically and got more and more psychotic as time passed. Her medication was increased to hights which corresponded to three or four times highest recommended doses. She was hallucinated as never before. She was now at times running around trying to avoid the snakes and fictitious blood-soaked creatures coming out of the walls. Why did the specialists never realize that something was completely wrong. WHY. It should, in my opinion, have occured to them, that Luises diagnose may have been wrong. And if so, the medication would be wrong too? Luises diagnoses was wrong, it appeared. When a psychiatrist finally started listen to me, and more important started reading the different records that pointed in that direction he declared that Luise suffered from Aspergers syndron, and that she over years slowly should out of the psychotropics. At that time it unfortunately was too late. Many people do get a wrong diagnoses and therefore also a wrong treatment. A fact that often has dangerous consequences, as it can result in physical -and mental disability or even death. It seems to me, that Luise foretold that the medication would kill her. She told me several times, that on her tombstone should stand ‘the medication killed me’. Luise died in hospital in 2005 hours after she was given her first depot injection despite the strenuous objections of both Luise and me. We were convinced it would lead to her death. We had good reasons for fearing depot injection. We argued that nobody ever knew how much medication Luise could tolerate as she had been vomiting all the years. Although Luise lived in Denmark and her story concerns the Danish psychiatric system, I know for sure, that the same could happen and do happen in most of the western countries. I keep asking myself. Why did it happen. and. Why couldn’t I avoid that it happened. But can only see one answer. I did all I could. But Luise and I didn’t get a chance to come up with our experiences of the treatment, and nobody ever was interested in Luises story. Another thing: The chart notes in Luises long file did not show that anybody ever read it. There was absolutely not continuation in the treatment. The chart notes just showed a long collection of single consultations, where nobody ever wondered why Luise after 10 years of heavy medication didn’t get better, but on the contrary. But again. Why does things often go so completely wrong in a very well functioning modern health care system based on evidence from advanced scientific research? And again I shall point out that Luises tragic story is far from unique not in Denmark not in the western world. Why is the treatment culture so extremely inhumane? How do we accept the increase in forced treatment and coercion? It seems to me, that it in some way  has become state sanctioned in the name of care and cure. One of the reasons could in my opinion be because the practice of psychiatry is based solely on the biomedical model which sees all symptoms as arising from some fault in the brain for which the only cure is medication. The same way as insulin is the cure for diabetes, the specialists always point out. When a mental health problem is considered to originate from a ‘chemical problem’ in the brain, the specialists can easily justify why it is important first to put that ‘chemical imbalance’ right. This treatment approach will consequently lead to that only the chemical disorder or the diagnoses needs to be treated. In this scientific universe the human being is neglected and so the patient all too easily becomes a dehumanised object and the doctor the all knowing expert. David Healy describes so well the patient/specialist-relationship in the foreword to ‘Dying for a cure’ by Rebekah Beddoe. ‘Drugs are available on prescription only, and when we go for treatment we are linked inescapably to the prescriber. In the ordinary course of events for most of us, going to the doctor is like going to the bank manager or the head teacher – we feel a few inches tall, absurdly grateful for the smallest signs of favour, and often completely forget what we had meant to say. This situation is compounded if things begin to go wrong after some treatment starts, when the doctor may quickly seem like our only way out. We become ever more dependent on him, and grateful. We are unaware we are heading into a medical version of Stockholm syndrome – the puzzling state where hostages are often close to being in love with those who have taken them hostage. If the difficulties we develop are caused by the treatment and the doctor doesn’t recognise that what he has done or is doing is wrong for us, then we become almost hostages to fate. The ultimate bind is that our questions will be put in the weighing scales against the scientific answers and found wanting, and what self respecting doctor in an evidence based medicine era will want to be seen to go against the evidence. Can all the guidelines be wrong? There is no-one on our side who is likely to point out that the so-called scientific evidence has been carefully constructed by pharmaceutical companies, who suppress trials that don’t suit their interests, and who selectively publish data from trials so that even a trial that has shown a drug fails to work and can trigger suicide can be transformed into a trial that shows unparalleled evidence of efficacy……’ Bad treatment stories like Luises are damaging for peoples trust in, that they safely can seek help for their mental problems. But I do see a faint light in the horizon. More and more people go public with treatment stories, that have gone wrong. And even more important. Specialists come forward and tell about why psychiatric treatment in their opinion is not that great success it was predicted to be in the fifties, when all the new psychotropics came on the marked. Their opinion is extremely valuable. Dorrit Cato Christensen

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2 kommentarer to “Write on my tombstone”

  1. Janette Robb Says:

    Oh Dorrit – what can I say.
    This is so familiar to me – we are living the nightmare – NOW. How many times have I told psychiatrists that people with Asperger syndrome display bizarre and dangerous side effects not seen in others? That my son couldn’t tolerate the drugs? That the drugs were making him psychotic? And then having every new psychiatrist say, “We must treat what we see, and what we see is ‘florid psychosis’”? Or – the dreaded observation, “He is undermedicated”.But he survived the depot antipsychotic experience – just.
    It’s all still happening – all over the world. Nothing much has changed.
    But who listens to a mother?
    Blessings to you from Scotland. xx

    • dorrit42 Says:

      Jabette, I’m so sorry, that you and your family has to live this nightmare because of the arrogance in the psychiatric treatment system. The psychiatrist are supposed to help you – not to harm you. What is wrong with this system. Why are they allowed keep on carrying out their very dangerous treatment, that disables many people and kills people. Why are they allowed to neglect what the patient and the next of kind tell about how they experience the treatment. It is so familiar to me what you write about not being listened to because the psychiatrist knows what the patient feels just by looking at him. I also remember so well telling that Luise got strange side effects from the medication, among others she got very hallucinated from the psychotropics. The psychiatrist said that her illness had gone worse. And then the sentence: ‘I must treat what I see, and I see a very mentally ill person who need a lot more medication’. How can they go on being so arrogant and harm and kill people without anything happening? I really don’t understand. I think a lot about you, your son and your family and hope for the best.

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