By Candice Louisa Daquin
Depending upon the country you live in, you may have to think back a long time or not so long, to imagine a time when talking of mental illness wasn’t mainstream. For many countries mental illness is still a taboo, but the internet has made knowledge of mental illness more wide-spread. You could be forgiven for thinking most people suffer from some form of mental illness. In reality, statistically, the majority do not. Most of us however, go through hard times where we may exhibit behaviour shared with those suffering from mental illness.
Having just finished co editing a large book on mental illness, I began to think about how we swung from one extreme (never acknowledging mental illness) to another (talking about it all the time). As a psychotherapist this isn’t perhaps surprising but the extent to which we label and evoke mental illness as explanation, might be.
Sometimes atypical behavior isn’t mental illness.
Teens, the elderly, the dispossessed, so many groups may suffer what seems like a mental illness but it really a natural response to a challenging situation. The adjustment of growing up. The challenges of getting older. Losing partners. Losing parents. Hormone changes. Trauma. Treating these events, the same way you would someone with a long-term mental illness like schizophrenia is ignoring the difference between an illness and a causative episode. With health insurance companies demanding categorisation in order to approve insurance, there has been a gradual shift toward ever-increasing terminology and labels. The problem with this is someone going through depression because they lost a parent can be seen as mentally ill — just like someone suffering from severe schizophrenia. But the two are not the same. We must be careful not to confuse malaise and regular responses to trauma and challenges, with a deep-rooted illness that might not be as curable. Why? Because we’re no longer understanding crucial differences in what we deem mental illness.
Therapists and medical professionals can be far too quick to state unequivocally that someone is mentally ill. This matters because just as ignoring mental illness and not talking about it, is wrong, so is over diagnosing it. The reason being, when you label someone, you set into motion years sometimes of inaccurate diagnosis and treatment which can do more harm than good.
Before you dismiss this as a rare event, think again.
Here are some case studies (real names not used) I have come across in my work:
John was told he was bipolar and was sent to an outpatient ‘group’ in a local residential center for mentally ill people. This was on the basis of his arguing repeatedly at his place of work and finally being fired. He also had several car accidents that he put down to ‘feeling angry’ and he attacked his wife during an argument. He was prescribed high dose psychotropic medication and his insurance was charged for the expensive therapy he received daily.
His family were horrified to find out their father was ‘suddenly’ mentally ill with bipolar disorder ll in his late sixties. They didn’t question the authority of the doctors until it became obvious something else was going on. At that time, he had sunk into a deep depression and seemed to be losing his ability to drive. The family asked the psychiatrists whether he could have dementia, to which they were repeatedly told — no he’s mentally ill. Firstly, this is an erroneous way of describing a condition as blanket-diagnosing mental illness, and second, they were wrong. John had the beginning of Alzheimer’s and his delayed diagnosis caused great heartache for everyone involved.
The question of how any competent psychiatrist could have diagnosed John with Bipolar ll which rarely if ever ‘suddenly happens’ late in life, is but one example of how a system will fit a diagnosis to its dominant perspective, in this case an assumption that certain behaviours are always congruent with a mental illness. John like many with Alzheimer’s did share some symptomology but nobody bothered to consider an alternative diagnosis and thus, the incorrect medication, expense and uncertainty caused a sad diagnosis of Alzheimer’s to become even more protracted and painful. Equally it should be mentioned for the sake of fairness, that there is an over-abundance of dementia-related diagnosis of older people where other causes are not considered and this is the same shortsightedness.
Liza, was diagnosed with schizophrenia based on muted affect, spells of catatonia and trauma response as well as insomnia, severe anxiety and depression. She exhibited paranoia and fearfulness as well as despondency and out bursts of anger. Even if those symptoms could fit the diagnosis for schizophrenia, they are too generalized to be assumed as such. Nevertheless, Liza was given EST (Electric Shock Treatment) and institutionalised for years, without another diagnosis being considered. It turned out Liza had never had schizophrenia but after years of medication it was hard to tell what was causing her behaviour. It wasn’t until years later when she began to open up to a therapist who cared, that Liza found out her symptoms were the reactions of severe childhood abuse and sexual abuse. These had never been considered because she was not asked about sexual abuse, and did not volunteer about it (most sexual abuse survivors don’t). It was easier to medicate her and inflict EST on her, than really understand what was going on. Liza went on to live a full life, but with the scars of her experiences and a deep mistrust of the psychiatric field (rightfully!).
These are two of many, many stories I could share of clients with misdiagnosis histories that caused them and their families a great deal of suffering. Of course, there is the flipside of people not being diagnosed with a mental illness and equally suffering and I acknowledge that happens too. The purpose of this essay is to consider the epidemic of over-diagnosis and how, maybe with good intention, we’ve swung from one extreme (nobody is mentally ill) to another (if in doubt, it’s a mental illness).
Whilst I am the first person to say accurate diagnosis and treatment can save lives when it comes to the mental health field. I have seen how doctors and practitioners can be subject to the undue influence of social trends in diagnosis and medication and how this can influence the accuracy of their diagnosis. Psychotropic drugs can have life-long effects which if that’s your only choice compared to the misery of a mental illness, you will accept, but what of those who didn’t need them in the first place? My concern is the over-medication and over-diagnosis of certain kinds of mental illness set a cascading storm into motion.
A colleague of mine who works as a psychiatrist had her own experience of being on the ‘other side’ when she developed a sudden onset illness. The illness included heart palpitations. My colleague went to the ER with chest pains thinking she might be having a heart attack. The physicians on call determined she wasn’t and their next recourse was to suggest it was an anxiety related issue. They prescribed anxiety medication and recommended she saw a therapist. My colleague went another appointment only to find out she was sitting in front of a psychiatric nurse. Despite her own qualifications as a psychiatrist, she said at the time she felt vulnerable, unsure of what was happening and very afraid. She explained her feelings of fear to the nurse, alongside her concern that she had no definitive diagnosis. The nurse did not refer her to another medical doctor for further tests. She recommended heavy duty anti-anxiety medications.
Because my colleague is a psychiatrist, she had the presence of mind to decline but it got her wondering what would have happened had she not been clued into the failings of the system? She could easily have been taking strong medications for a ‘suspected’ case of anxiety, without really finding out what was wrong and caused her heart palpitations. It took my colleague a long time to finally get an answer. A rare disease. With treatment she recovered. The lesson she learned however, terrified her. She now understood how at the mercy of doctors most patients were and how often diagnosis wasn’t a precise science or even an educated guess, but more of a ‘by rote’ method that was deeply flawed.
She showed me the thirty something bottles of medications she was given with every appointment and explained that had she been truly suffering from a serious mental illness, she would have had more than enough to overdose with, even given the safety protocols of modern medicine. She also explained the ease with which she was given extremely powerful drugs, without a documented diagnosis and how many side-effects those medicines potentially had. She is now an advocate for change, hoping the medical industry and the pharmaceutical industries can be cautioned against rash diagnosis and over-medicating. It worries me that it takes an expert in the field to raise a red flag and I remain pessimistic about her success in changing a well-oiled system that earns billions in kick-backs and profit from the perpetuation of an illness rather than a cure.
Getting into hospital unless you have a heart attack or amputated limb isn’t easy any more. The model is more about treating patients and sending them home. This works for many, and expands on the ‘care in the community’ concept with mental health (which has floundered since inception, creating huge groups of homeless mentally ill) but does not work for everyone, especially those with harder diagnosis. Consequently, many of us have learned what it feels like to be a patient going through a broken system, what you had to do to get what you needed and how hard that would be if say, you were in the throes of a serious illness (be it mental or physical). Some doctors are responsive, caring and compassionate, whilst others merely check a box. The inadequacy of systems set up to help both the physically and mentally ill is underfunded and the level of treatment often fractured, in favour of cost-saving protocols that were often unapplicable to those they served. How challenging must it be for patients to seek good help during some of the hardest times of their lives?
I have sympathy for the over-worked/under-paid GP/family doctor who is restricted by insurance protocols and limited in what they’re able to offer their patients. I understand how it may seem easier to offer an anxiety medication or label someone bipolar, than spend weeks trying to get to the real cause. But you don’t heal anyone with a wrong diagnosis, and you mar the field of psychiatry by misdiagnosis. It’s no wonder I’m often mistrusted as a mental health worker, because so many of my patients have had negative experiences of being judged, marginalised and labeled, by previous psychotherapists and doctor. It only takes one person to assume you’re not coping and must be clinically depressed, to set into motion a whole chain of events. What if that practitioner had looked beyond the obvious and considered the evidence more closely? But sometimes it’s easier to reach for the prescription pad. You are doing someone a disservice if you medicate a vulnerable person on the basis of basic symptoms rather than looking at the whole picture. It’s a catch-22 situation with such short appointment times and a burgeoning patient load.
In prisons, where a high number of inmates have mental illness that are not treated through accessible programmes, drugs have become the surrogate for competent therapy. It is simply cheaper to drug a patient than offer 1-1 therapy. Whilst it may not be fiscally possible to offer low-cost or free therapy to everyone who needs it, we shouldn’t use drugs as a substitute if they’re not the answer. Most psychotropic drugs were designed to be used short-term but many people take them for years. If you imagine some of those people could be misdiagnosed or not really suffering from a mental illness so much as a hard time that will resolve, then you’re responsible for drugging people who shouldn’t have ever been drugged. How is this an answer to anything?
In nursing homes, patients with dementia and other diseases often take over ten medications that ultimately won’t cure anything but will make the pharmaceutical industries rich. The reason? To keep them compliant and calm. So they won’t bite, make a fuss or tax the underpaid staff. Again, I can sympathise with wanting to medicate a troublesome patient, but in shrugging everything off to mental illness we lose touch with the real cause and effect and shirk our responsibility to accurately treat people. Maybe with fewer doctors and ever-increasing medical costs this is no longer possible, in which case as more of us age and get dementia or alzheimer’s, expect to see a steady increase in the use of psychotropic medication as a means of management.
I have met many who have had similar sudden onset, long lasting catastrophic illnesses. Many of them were told by doctors that these illnesses were psychosomatic or psychiatric in origin when it turned out to be a hundred percent physical. Whilst I don’t deny that some illnesses can be psychiatric in origin, many are not and women are far more likely to be told their illness is ‘in their head’ or ‘an issue of nerves’ – and this not just from the medical industry, but their families and friends. Like anything, when you’re in a dark place it’s very easy to convince yourself, the doctor is right, which can further exacerbate misdiagnosis and unnecessary suffering and stigma.
For the seriously physically ill, this is as bad as having a heart attack and being told ‘you are anxious you need to calm down’. It is counterproductive and often causes people who need help not to seek it. The blurring between the physical and the mental is unacceptable. Whilst there is clearly a mind-body link, assuming everyone with anxiety must be mentally ill (rather than anxious for a good reason) is short-sighted and potentially damaging. Likewise, labeling every woman histrionic because she’s panicking about something, is using mental illness categories as a weapon.
The gender divide between how doctors treat female versus male patients is a long-standing inequality, based upon the old concepts of hysteria (a female term applied toward women only) and the link between mental instability and the female body. Whilst it is true that menstruation, hormones and menopause can definitely change a person’s mood, this is not the same as true mental illness and it is high time we understand the difference between feeling anxious or depressed and suffering from clinical depression or anxiety. The only way we achieve this is by quitting our tendency to label certain groups without further enquiry. This includes women, people of colour and lower-income persons — all of whom are more often assumed to be mentally ill than other groups.
The harm of a misdiagnosis is, as I said earlier, as bad as no diagnosis. The rush to come to a conclusion is something that turns into a scarlet letter for the bearer. Despite our best attempts, mental illness is still stigmatised, and as such, once diagnosed, this can affect everything from future job prospects, marriage, friendships to even housing. In the information age, medical privacy is constantly under assault, and even future employers are able to find out about people’s private lives. Should they discover that person has a mental illness that they stereotype as being negative, this could reduce a person’s equal chances. The old adage, ‘crying wolf’ also applies because we over-diagnose and popularise in unhealthy ways. That causes people to shirk when someone really does need help.
Why do we stigmatize the mentally ill? I often hear from clients who are overmedicated and some who are undermedicated, both extremes existing because one provokes the other. A lot of psychotropic medication is not effective and placebo at best, leaving the medical industry with a big question mark as to how to help the mentally ill. Whilst I don’t have all the answers either, I would say, ensuring someone is really mentally ill before acting on it, is one positive step toward reforming a broken system. Currently so much money is spent on mental illness but people are not getting better, they are getting sicker. That means something really isn’t working. I’m not convinced the recent move to online psychiatry is the answer either, given the danger of powerful medications. I’m also not convinced strong medications like Ketamine and Ecstasy should be given without close monitoring. I’m all for creative thinking in medicine, but not without caution.
Finally … when is a mental illness not a mental illness? We should be open to alternative diagnosis rather than the category of mental illness as a catch all for when we’ve no better answer. Just because something isn’t apparent, doesn’t mean it’s a mental illness. There is so much the medical industry doesn’t know and often it takes patience and commitment to discover a rare disease. If we didn’t spit people out and try hard to see as many people as we could, we might have time to discover the real cause and not send people home with incorrect medication. It’s damaging and it further stigmatises those who really need mental health treatment. On the other hand, sometimes feeling anxious is just feeling anxious, and not something to pathologise. We will all feel depressed or anxious at times, it doesn’t mean we need a category and our current system doesn’t seem to have another option. How about we start with asking the patient – what do you think is going on? Often, we learn the most from our patients, and they will help us know whether they have a mental illness or are just going through a hard time. The difference between providing short-term supportive care and getting someone on a life-time of strong medication is huge and we need to have our eyes wide open.
Candice Louisa Daquin is a Psychotherapist and Editor, having worked in Europe, Canada and the USA. Daquins own work is also published widely, she has written five books of poetry, the last published by Finishing Line Press called Pinch the Lock. Her website is www thefeatheredsleep.com
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