When patients are not believed
Psychiatric misdiagnosis and its effects.Sarah David
(First published by Women in Medicine, January 1999).
A rough path is sometimes worth the treading if, in doing so, we can tread down the brambles in the path of another.Anon.
Some types of disability are invisible. You can't see vertigo, nausea or a flu-like malaise just by looking at someone's face. Since the effects are often non-specific, correct diagnosis depends on being able to give an adequate description of one's symptoms, and on the condition being recognised by a knowledgeable practitioner. The following article describes my experiences after a bout of flu left me with chronic vertigo. It discusses the effects of misdiagnosis, and the prejudices which can influence clinical judgement.
Health professionals tend to equate disorders with a set range of impairment. Thus condition A is associated with Y amount of disability while treatment B carries an expectation of Z amount of side-effects. If patients say that they are more disabled than predicted and their doctors do not give them the benefit of the doubt, the apparent discrepancy may be labelled abnormal illness behaviour (AIB), somatisation or hypochondria.
As a psychologist, I know that AIB is a valid concept. The term covers the situation where patients misinterpret their symptoms, delay seeking advice or adopt maladaptive coping strategies. It describes irrational behaviour, or rather, what doctors regard as irrational. What is adaptive is also defined in medical terms. However, both these judgements often fail to take into account the patient's culture, individual circumstances or missing information. In my case, there was a straightforward gap between my doctor's expectations regarding the effects of my illness, and my experience of the same. So why did she not believe me
It clearly had nothing to do with being poorly educated or badly informed. She knew that I had three degrees, including a doctorate. Nor was it the result of sexism, since prior to this illness our relationship was extremely good. As far as I can see, my problems arose because the MRI was clear and the chronicity of the vertigo didn't fit the descriptions in the textbooks. Moreover, I had no nystagmus or hearing loss, considered by many as the main indicators of disease. How-ever, what really short circuited the investigations was the neurologist's interpetation of my sudden loss in weight. After the onset of the vertigo, my weight dropped from 48 kilos to 43. Although I didn't want to lose any weight, did not have amonorrhoea or for that matter, any other signs of an eating disorder, he informed my GP that the vertigo could be attributed to anorexia. At the same time, he told me that the source was probably metabolic and I'd need to see an endocrinologist. Not surprisingly, my GP refused a referral to the recommended specialist and I was sent home with a repeat prescription for Serc.
If there is uncertainty about a diagnosis, deciding whether one is medically or psychiatrically ill is often a matter of social negotiation. So how does one prove that one is telling the truth? One doctor admitted why he hadn't believed me. 'You are a psychologist', he said. 'You therefore know how to manipulate people!' I wasn't surprised by his obvious lack of respect for my profession. We still have an image problem and several series of 'Cracker' have done little to change that. However, what bothered me was the peculiar logic. Admittedly, psychologists know how to manipulate people. On the other hand, what would have been the point? Disability benefits are not exactly generous. Being isolated at home, barely able to read or do anything else you enjoy, and being dependent for almost everything on your parents, isn't my idea of fun. If someone wants a sizeable income and lots of sympathy, who'd pretend to have chronic vertigo?
Another comment was even more depressing. 'You won't accept a psychological diagnosis because you have a prejudice against mental illness' said a second doctor. I thought that was a little like accusing a Jew of being anti-Semetic! I expect more sophisticated reasoning from someone trained in medical science. Why would a middle-aged psychotherapist with an interest in depression be prejudiced against mental illness? If that were true, I should have been struck off years ago.
A friend who has a similar illness told me he's never encountered doubts. 'It's because I'm an accountant,' he smiled. 'People don't think I have the imagination to make this up! And being 6'2" helps'.
After several months in bed and still feeling giddy and ill whenever I moved my head, I phoned the community psychologist for some much needed emotional support. She spent two hours asking me questions, told me she understood my frustration and walked out of my life. Apparently, the area health authority wouldn't pay for more domiciliary visits, and since I didn't have a 'substantial' disability, she didn't feel I needed referring anywhere else. Before getting too depressed, I searched through Yellow Pages and found a private therapist willing to see me at home.
My analysis of the problem led me to conclude that what I needed now was objective evidence of pathology. A consultant physician whom I saw privately organised a number of tests which revealed abnormal levels of cortisol and liver enzymes, and raised levels of antibodies against gliadin. A low gluten diet improved my digestion but while I regained a substantial amount of weight, it had no noticeable effect on the giddiness. Meanwhile, a medical report drawn up for the DSS revealed that I had a pale disc, which fitted in with the blurred vision, pain behind the eye, and flashing lights. However, despite all the findings and a highly supportive letter from the new consultant, I could not escape my past. For two years, the words of the neurologist continued to exert a malignant influence in my notes. As a senior NHS consultant, his views clearly carried more weight than those of his colleagues from the private sector. Thus my problems continued to be regarded as largely psychological and I was denied additional help on the national health.
For several months, I coped as best I could. Being treated like a malingerer hurts. Not getting emotional support when one is genuinely disabled hurts. Not being able to get advice about coping with horrendous symptoms hurts. Why was this happening to me? By now, another consultant whom I'd seen privately thought I had a neurological problem and said as much in his report. However, my GP wasn't swayed and neither was a locum, after he'd read that letter in my file!
Throughout this time, I'd also had a lump in my breast. However, two mammograms and an ultrasound had shown nothing suspicious and three doctors had reassured me that there wasn't anything 'sinister'. Since I had no reason to question them, I happily agreed with their advice to wait and watch. Eighteen months later, a follow-up ultrasound showed that the lump had grown. Again, the surgeon wasn't concerned, even when he took it out and the student asked him about the calcification. "It's fine", he said, and I believed him.
Oh what a difference a word makes! After all those negative tests and expert opinions, my lump turned out to be malignant. Even though I was the same person with exactly the same psychological make-up, that one word led me to a world where my honesty wasn't challenged and where doctors responded to the problems I had, not the ones I didn't.
It took quite a while to adjust to my new status as a trustworthy adult. In the hospital, I kept waiting for nurses to tell me to pull myself together or to minimise the illness. Instead, I was offered psychological support by the gallon and found myself treated with respect and care. Some people even described me as brave and courageous, but in reality, the vertigo has been much harder to cope with than either the malignancy or the treatment which followed. Thank goodness for triple assessment!
As a result of this experience, I was no longer prepared to live with the vertigo. I asked to see the neurologist's letter and realising his mistake, set about trying to get the help I required. "You're not as disabled as you think you are", claimed the locum, trying to put me off. Undeterred, I went to see the neurologist to 'update' him on my symptoms and inform him of the difficulties I'd encountered as a result of his 'diagnosis'. He not only refused to apologise, but also charged me for the consult!
Psychologist Alan Radley wrote in 'Making Sense of Illness' that if others do not agree with your interpretation of your condition, then your claim to be a sick person will not be accepted and your illness might be disapproved of. He is right. This is the other side of abnormal illness behaviour. The one not found in the psychiatric texts!
The misdiagnosis has damaged me financially, medically and emotionally. It's made me afraid of doctors and undermined my integrity and self-confidence. It's ruined an otherwise excellent relationship with my GP and left me to fend on my own. Despite what they say, I AM disabled. I've lost my career, my independence, my financial security, my ability to walk more than a few yards: my life. Even if the cause is unclear, the effects are certainly not.
It's hard to describe what happened to me without seeming to exaggerate. Moreover, having been on the other side of the couch, I am well aware that most practitioners do their best and that when criticised, we tend to defend our own. However, I hope that I've communicated just how difficult it is to challenge psychiatric misdiagnoses and the various prejudices which can lead us astray. Both affect a doctor's estimation of the magnitude of disability and if that doesn't match the experience of the patient, the result can be as damaging on the soul as prescribing the wrong drug is for the body. Unexpected disability may well be the result of AIB. At least now you know what happens to the patient if it isn't.
Be sure to see the many other valuable articles at our Main M.E. Home Page