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A Case Of Bad Handlingby K.
When I first discussed writing this short piece with Margaret Child I was unsure about how to handle it. The result is below. It is a description of what happened to me when I decided to discuss my feelings with the medical profession. I consider the treatment I received from them to be appalling, not from lack of resources, but from fear and lack of understanding on the part of those principally involved in dealing with me. As such, I hope, for the sake of others, that my experience is unique; but what bothers me is that I am sure it is not. I make no apology for the degree of cynicism I am left with towards the euphemistically labelled 'caring professions'; however, to be fair, my more recent experiences have changed that opinion slightly.
I am now 30, and have been what is now described as a wannabe for well in excess of 20 years. Since the age of 5 or 6 I have wanted to have my left leg amputated above the knee. I lived with that until I was 27, having never told a single person. At that time I decided to tell my wife, as the secrecy and isolation it caused were beginning to become intolerable. I told her and she was great, really understanding, more than I had any right to expect. She encouraged me - and I wanted to, as well - to seek some help, some understanding,and perhaps even a cure. That may well be very na´ve, but after telling somebody for the first time I didn't know what to do, where to go, or anything about my condition.
As a result I visited the local community health team. They were fine. They didn't pretend to understand, but at least they were honest about it. A few weeks after that it really began to depress me, and I didn't know where to turn. I should add that at the time I had just changed careers and moved house, so obviously the stress level must have been high. Eventually the nurse I was seeing at the Community Health Team persuaded me to be admitted to the local mental hospital as a voluntary patient.
After that, things went downhill very quickly. The nursing staff were fine; even the registrars were too. I was depressed. This is more than anything else at at the time and all I needed was some support. I can remember saying many times that I know my feelings are irrational, but I just want to be told that that I'm not weird and that really I'm OK, just in need of some help. The consultant could/would tell me what was 'wrong' with me, but he could also do something for me. He wanted to give me electro-convulsive therapy (ECT) (which I refused) and then he decided to give me drugs. I have always been suspicious of 'mind-altering' drugs, but he assured me that what I was receiving was just a mild medication that wouldn't really affect my consciousness or awareness. I know now that that was an absolute lie.
At the same time I was receiving the medication I was called before a case conference of all the doctors in the hospital because my case was so unusual (so much for minimising my anxieties). Before more than 20 people I was asked the most personally embarrassing questions I can imagine, and also some of the most banal. I was asked 'What would you do if we amputated the wrong leg?' by one doctor. This was met with great laughter from his colleagues. Nothing changed, and after a further month I was discharged with no explanation, having received no treatment (other than a strong drug cocktail) or in-depth consultation. Most of the time I was in a semi-stupefied state.
Some five months later it suddenly hit me through the haze what a state I was in, when I tried to have a conversation with an old friend and just couldn't do it. I decided I wouldn't take any more medication and stopped it very quickly, despite the protests of the consultant at my ten-minute monthly out-patient appointment. Very rapidly I began to feel much better and within six weeks I was pretty much back to normal existence.
A few days before I was due to return to my studies at my university - the only thing that had kept me going - I had an out-patient's appointment. I decided not to go, but at the last moment changed my mind, being determined that I wanted some sort of explanation of what was wrong with me, now that I was in a far less vulnerable state than I had been previously. I met the consultant with my wife and a nurse who knew me during my stay and who knew me better than anyone else there. I gave him a hard time, and wanted him to tell me what was wrong with me. He couldn't; I kept challenging his answers (for the first time I was in a state to be able to do so) and eventually cornered him. He got very angry, told me I was being unreasonable, and stormed out of the room saying the he was going to admit me compulsorily and give ECT, against my will if necessary. Perhaps not surprisingly I was very scared, but fortunately the nurse stood by me and told me that I had not been unreasonable, just firm. When the two individuals who were to complete the sectioning (compulsory admission to a mental hospital) they rejected the idea very quickly, and I went home with the promise that I would hear from somebody else within the next few days, to try to provide some other form of help.
One thing I didn't know at the time was that just before the consultant saw me he told my wife that he didn't believe that I felt the way I did about my leg: he said it was all just made up so I could avoid going university. When she told me that my initial reaction was anger. Within a few seconds, it dissolved into absolute despair. I cried for hours at a time, for days on end. I'd been filled with drugs, subjected to mass humiliating questioning, isolated, I felt an absolute freak, had been threatened with compulsory ECT over which I would have no control at all, by a man who didn't even believe me! It hurt most incredibly.
The promise of follow-up treatment didn't come until nearly three months later, when I received a terse summons to attend and out-patient's appointment with the same man. I had not intention of going, so I wrote back saying so, and asking some questions about my treatment. He didn't answer; that infuriated me, so I wrote to the Health Authority demanding a response. I eventually got the brush-off response saying that everything had been fully investigated and was quite in order, but it studiously avoided giving answers to the questions I had posed. I wrote back, again and again, but each time they avoided the specific issues that I had raised. After some months I eventually gave them an ultimatum - either explain to me, or to someone else. By this time I had convinced myself that the treatment I had received was not as good as it should have been. All I wanted was someone to say sorry. The more they ignored me, the more determined it made me. Within two days of my ultimatum I was invited to meet the Chief Executive of the Health Authority to discuss it with him. I got my apology, but of course they refused to put it in writing. At the time, it sufficed, but is now still the source of some hurt. They can't even say sorry properly. If it wasn't so painful and I had the resources I would want to do more, but I know that I could not succeed.
That was nearly two years ago, and since then things have very much improved for me. I still have a bad time at the end of each year but that is now as much because of the the above as the wannabe aspect. I feel that there are several reasons why I survived - and some stages it was as serious as that. One is partly my own character, but more is down to my wife and two close friends who have been superb, and to all of them I now owe a great deal. The medical profession did a great deal of damage. I would have benefitted much more from just counselling and support than from being subjected to their designs. At the base of it they were interested only in a possible condition: they forgot I was a person.
It doesn't quite end there. Since then a few things have come to light that I feel serve my contention that the medical profession is very powerful, dangerous, in some cases totally incompetenet, and above all virtually unaccountable. At the time I was first in hospital and met all these doctors, I was a 'first' never seen before, and that was in 1989. Many of these individuals no doubt consider themselves eminent in the psychiatric field. If that is the case why did none of them know of the articles written by Dwight Dixon, John Money, and others, sometime previously, or at least make an effort to find out?
I have since met the individual who trained the consultant to whom I was a patient in a professional capacity. He confirmed that the processes I had been subjected to were unreasonable - the consultant had described my condition as a delusional one in that I believed that my leg was not there. That is patently untrue, and just proves that in the whole of the period he treated me he never listened to what I said.
Just to take the paranoia you may think I am suffering from one stage further, let me give you just two more examples of how medical networking could have potentially dangerous results.
Some time ago I approached a well-known counselling organisation. They felt they might be able to offer some longterm counselling, but would need to consult a supervisor. The supervisor rang back. He was a doctor and said they were unable to help and that I should 'see my GP'. I had explained that although supportive, my GP had admitted that he couldn't help me, but that had no effect: he just said he was sorry.
The second incident followed similar lines with another counselling organisation. When the individual came back to me after consulting with her supervisor her attitude was totally changed. After an iniital hour of interview with her she had been highly positive and felt they could help. When she talked to me again she had changed: now she was backing off, saying they were unable to help. When I asked her why, she said her supervisor had thought it wouldn't be the most helpful approach. She accidentally mentioned the supervisor's name, however. I confirmed it with her again and it turned out to be one of the very same doctors who had behaved so badly previously. In effect they had not only deprived me of medical treatment by their lack of knowledge two years previously, but had then denied me of the potential benefits and solace that good counselling might have been able to offer.
If I have any advice to offer it is very halting. I think if you become involved with the medical profession you must make it very clear that you are not just a one-off. Make them listen to you and quite clearly understand what you are saying.
Note: Since this article was written the medical profession in Britain has become more aware of the needs of wannabes, in part as a result of a television programme broadcast in July 1994, which brought wannabes to the attention of the public at large and the medical profession in particular. A critique of the programme was published can be found in Wannabes on television. This programme attracted the interest of some members of the medical profession and a result OverGround 5(1): p. 27 published an invitation to all wannabes to participate as subjects in the research of a psychologist, and a surgeon. An account of the experience of one man who accepted this invitation is published in OverGround 5(2): 28--31, Exploring the wannabe phenomenon.
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