On the psychological level recognition means support. As soon as we are ill we fear that our illness is unique. We argue with ourselves and rationalize, but a ghost of the fear remains. And it remains for a very good reason. The illness, as an undefined force, is a potential threat to our very being and we are bound to be highly conscious of the uniqueness of that being. The illness, in other words, shares in our own uniqueness. By fearing its threat, we embrace it and make it specially our own. That is why patients are inordinately relieved when doctors give their complaint a name. The name may mean very little to them; they may understand nothing of what it signifies; but because it has a name it has an independent existence from them. They can now struggle or complain against it. To have a complaint recognized, that is to say defined, limited and depersonalized is to be made stronger. John Berger
“Illness is what you have when you go to the doctor, disease is what you have when you leave” Iona Heath.
There is an interlocking Venn diagram of illness, disease, and sickness, first proposed by Andrew Twaddle in 1968. Illness is a subjective sense that there is something wrong, you don’t feel well. Disease is the physiological or biological dysfunction. You can have illness without disease – a headache or backache or fatigue for example, or disease without illness – cancer or kidney disease without any symptoms. Sickness is the social identity/ social life of the illness and/or disease. In the case of Diabetes for example, illness may be symptoms of fatigue and thirst, disease includes insulin depletion and insulin resistance, and sickness involves having to take medication, attend GP and hospital appointments, calorie counting and glucose monitoring.
Sociologist of diagnosis Annemarie Jutel describes diagnosis as a medical superpower because of its transformative potential. Citing examples from fiction, like Walter White in Breaking Bad who is transformed from High School chemistry teacher to murdering drug lord by his diagnosis of lung cancer, to a neurosurgeon disarming an assailant by the act of diagnosing him with the same terminal condition that affected his father in Ian McEwan’s book, ‘Saturday’. Because of its transformative power either to change or reveal a true identity underneath, a diagnosis is a common literary device.
Whereas most diagnoses follow illness and offer a medical explanation for symptoms that patients are suffering, there are some diagnoses that are given to people who hadn’t considered themselves to be ill. Danielle Spencer defines a ‘metagnosis’ as a diagnosis of a condition that has always been there, for example when neurodevelopmental conditions like autism or ADHD are diagnosed in adulthood. She describes this transformative power as a ruptured narrative because the story of your life must be rewritten in the light of the explanatory power of the diagnosis.
It is important to note here that illness is seamless, the borders between illness and wellness are fuzzy and indistinct. Diagnoses by contrast are categories with borders guarded by doctors who have the power and authority to give them and on occasion, to take them away. This is one of fundamental problems with the diagnostic project. It began in the 17th century based on natural classifications of animal and plant species, but diagnoses are not natural categories. With the exception of genetic disorders and some other inherited disorders, they are defined by committees of experts, frequently contested, occasionally revised, sometimes redacted, and can only be authorised by medical professionals. They are social categories, not facts of nature.
This is not to say that diagnoses lack any validity or reliability. Validity is the accuracy with which a diagnosis defines and differentiates a diagnosis from other disorders, reliability is the consistency with which a diagnosis is applied between different professionals and over time. A diagnosis needs to be both valid and reliable and professional judgement is relied upon to ensure that diagnoses are not applied arbitrarily so that validity and reliability are assured. Medical professionals are trained diagnosticians.
What are diagnoses for? Competing and conflicting functions.
One way of thinking about this is in terms of micro, meso, and meta functions.
At the micro level, there is the point at which your illness is diagnosed. As in the quote from John Berger at the beginning of this essay, to be diagnosed is to have your suffering validated. And I think it matters a lot that there is an imbalance of power between doctor and patient because validation from a doctor means being seen and heard and believed and taken seriously by someone in a position of authority. It serves as an explanation and serves a moral function – “It’s not me, it’s the illness”. To be told that your results have all come back normal and your symptoms do not amount to a diagnosis may not result in relief, but may be perceived as disbelief, and experienced as invalidation. In these cases patients who feel ill and are suffering but not diagnosed say that they feel ‘fobbed off’. Disbelief and invalidation from a powerful figure may trigger memories of other times in a patient’s life when someone in power or authority over them didn’t take their concerns seriously. In some cases this transference can put the doctor in the symbolic role of an abusive partner or neglectful parent.
At a meso level diagnosis serves as a way of professional communication, shorthand to accurately describe a condition, ensuring that the right treatment is used, safely and appropriately for the condition that it was tested on before it was licensed and approved to be prescribed. Researchers need to know that when they are testing a treatment for migraine in one study, they are treating the same condition that was being treated in other migraine studies. Clear, valid and reliable diagnostic categories enable epidemiological studies to track the numbers of people with different conditions and their rise and fall and response to social, environmental and other factors. A diagnosis can make the invisible visible, for example in my practice we have tried to identify and code everybody with chronic pain, so that we know what proportion of our patients have chronic pain and can be sure they are receiving appropriate treatment. If every practice did this we could lobby for more training more resources and more support for people with chronic pain and those who look after them. For research and epidemiological studies, tightly defined diagnostic categories are especially useful here, at the meso level, whereas at a micro level they are more loosely applied.
At a macro-level diagnosis serves social and administrative purposes. So instead of trying to describe symptoms you can simply say, “I’m having a migraine” or “it’s the menopause” or, “I’ve been diagnosed with lung cancer” and people will give you peace and quiet, empathy or sympathy accordingly. A diagnosis enables access to benefits, adjustments at school, in exams and at work, and sick leave. It allocates and rations treatment, so that services can focus on the people who really need their help and are likely to benefit from it. Treating people who are depressed but do not have a major depressive illness with psychotropic drugs is likely to do more harm than good. Treating people with all degrees of ADHD with the same medications and adjustments at work and college disadvantages those at the more severe end of the spectrum as well as those with similar difficulties who have not been diagnosed.
Self-diagnosis.
Self-diagnosis has become vastly more popular since I qualified as a doctor in 1996 for a number of reasons including, but probably not limited to, the internet, social media, politics and individualism, scientism, direct to consumer advertising, and the loss of belief in expertise. The internet enables everyone to look up their symptoms online and AI will even do that for you. Social media enables ‘influencers’ and advocacy groups to coalesce around shared identities to much greater extents than in the off-line world of shared interests, geographies, purposes or projects. Political neoliberalism over the course of my personal and professional lifetime has moved away from issues of class and justice towards individualism, identity and rights. Scientism which is the dogma that purports that science (and especially medical science) is the truest way of explaining the world, has meant that people increasingly describe social problems in medical / psychological language, so that social challenges get described in terms of individual anxiety, depression or complex trauma. Direct to consumer advertising of drugs and diseases creates demands for medication or diagnoses that confer a right to treatment (in many cases drugs). There are many ‘advocacy groups’ for diseases funded by drug companies for example. And the loss of belief in expertise, or perhaps the loss of epistemic authority has empowered patients to be their own diagnosticians.
Self-diagnosis is concerned with the micro and macro level uses of diagnosis, but not so much with the meso level, where strictly controlled boundaries are more rigorously applied. As a GP I too have little to do with the meso level, but I am concerned to preserve the validity and reliability of diagnoses and ensure that my patients get the appropriate treatment and aren’t harmed by an inappropriate diagnosis or none where one is appropriate.
Like many doctors, I am confronted by increasing numbers of patients looking for me to confirm the diagnosis they have already diagnosed themselves, from parasitic infestations, to chronic Lyme disease, ADHD and autism, the andropause and more. There are apparently ‘affirmative diagnostic services’ operating privately, although it’s long been known that you can get almost any diagnosis if you pay the right doctor. The risk here is of a heuristic known as a ‘confirmation bias’, whereby alternative explanations are overlooked. One patient came in wanting a diagnosis of ADHD for no reason they could identify other than, “I want to know why I am like I am”. I thought that they should see a therapist, or travel or read (or take hallucinogenic drugs or whatever), but it wasn’t existential soul-searching they were looking for, it was a diagnosis. For some people a diagnosis gives them access to a group with the affiliation and validation that goes with membership. Loss of that group identity can be distressing. I have one patient whose psychiatrist revised her long-standing Bipolar diagnosis which meant that she could no longer go to her Bipolar support group that she had been going to for years and it was far more upsetting than liberating. I know a once prominent Chronic Pain patient advocate/campaigner who recovered and was ostracised from her group, and treated as a pariah. A diagnosis can be sticky especially when it’s taken on as an identity. The son of a friend who has moderately severe autism insists that he doesn’t want it to define him while there are others whose autism would be impossible to spot we’re it not for their out and proud self identification.
As an NHS GP, patients do not pay me for a diagnosis. I have to preserve my clinical integrity and protect my patients. I’m their doctor always and their ally when I need to be.
Psychiatrist philosopher Chloe Saunders gives 3 reasons for being concerned about self-diagnosis
- Epistemic authority of clinician necessary for meaningful diagnosis
- Diagnosis has many competing functions.
- Potential harms: “I have/ am X, therefore Y
If patients were able to diagnose themselves, they wouldn’t be upset so often as they are when a doctor doesn’t agree with them. There are quite frequent disagreements over psychiatric diagnoses like bipolar and ADHD, but also relating to male menopause and symptoms of chronic pain or fatigue which patients prefer to attribute to a diagnosis. Not infrequently, because I work in a deprived area where a lot of my patients depend on benefits, the social, bureaucratic function of diagnoses means that whether or not my patients’ symptoms can be described in terms of a diagnosis means the difference between getting enough benefits to be able to afford to eat or not. The pragmatic GP finds a way to label symptoms in a way that stops their patients from starving. This is the state of deprivation in England today.
A diagnosis can serve as bureaucratic shorthand, but it’s also shorthand for patients too. It can explain their difficulties more succinctly and with less self-examination than psychodynamic therapy. This is not to say that a diagnosis necessarily serves to close off other ways of thinking, but it’s certainly a risk, and ‘diagnostic overshadowing’ is something patients as well as clinicians are concerned about. A misdiagnosis, for example, if a patient diagnosed with ADHD instead of bipolar disorder might result in a manic psychosis being triggered by stimulant medication.
The competing functions of diagnosis I’ve outlined above. There are overlaps between diagnosis and identity and when patients strongly identify with their diagnosis it shape who they are and who they become and serve to explain aspects of their personality and behaviour that may not be helpful. The mantras, “I am not my trauma” and “history is not destiny” are important ones in the area of Complex PTSD and developmental trauma, but can be applied in all aspects of mental health where nihilism can trap people inside the identity of their diagnosis. The mantras exist, because there is the tension between illness and identity is very hard to resolve. In his essays on the diagnostic classifications for the London Review of Books, Ian Hacking described ‘Looping Effects’ and ‘Making People Up’. The act of creating classifications of certain kinds of people changes these people and this is the ‘Looping effect’ “Sometimes our sciences create kinds of people that in a certain sense did not exist before. I call this ‘making up people’”.
He proposes two sentences, (I paraphrase slightly)
- There were no people with this disorder before it was defined and given a diagnosis.
- Before the diagnosis of this disorder, people did not experience themselves this way. It was not a way to interact with their friends, family, employers, but after the disorder was defined and given a diagnosis it was a way to be a person, to experience oneself, to live in society.
His argument is that disagreements over 1 don’t get us very far. Whether or not you think that ADHD exists or is a specious diagnosis, will likely never be resolved. What we can (hopefully) agree on is that it is now a way of existing in the world in ways it wasn’t before as a result of the creation of the diagnostic category. 2 is true.
The tension between illness and identity is very well described in this personal account of depression, Am I Blue? There is a tautological trap, or Mobius strip of circularity when she asks herself “why am I depressed?” and the answer circles around various possible causes before coming back to, “because you have depression”. Is depressed something you are or depression something you have? Is a question that’s very difficult to answer, because mental illness transforms identity.
Philosopher Havi Carel talks about existential and epistemic transformation of illness. Take Mary and Martha, women in their 60s who had heart attacks at the same time. Both were patients of mine and had lived pretty rough Hoxton lives which featured a lot of cigarettes, alcohol and violence. I visited both of them shortly after discharge from hospital. Mary told me that she had been meaning to sort her life out for some time, and surviving this heart attack convinced her that if she didn’t do it now, she would likely die. She left her husband, gave up alcohol and cigarettes, changed her diet and spent her days volunteering at her church. Martha said that she wasn’t going to let a heart attack change a thing and carried on with the same lifestyle as before. Both Mary and Martha were epistemically transformed because they had first person knowledge of a heart attack and heart disease that you cannot get without suffering it yourself. Perhaps only Mary was existentially transformed, however Martha, for all her insistence that a heart attack wouldn’t change her, experienced the world differently after her heart attack. She continued to get angina and this exacerbated her anxiety, she got breathless and these both restricted her physical activity and constrained her social life. She became increasingly withdrawn and died a couple of years later from another heart attack. Mary still comes to see me and reminds me of how much her life has changed.
Diagnoses and Identities are evolving all the time.
I think that many of the problems described above are because identities aren’t fixed, and as writer Rebecca Solnit says, “all categories are leaky and provisional”. I think the same about identities. I’m 52 and pretty comfortable these days accepting the ways that my injuries have shaped my body, my children have transformed me in ways I can’t begin to describe, work affects my mental health and self-esteem, my familial genes, traits and experiences continue to affect me, as much as ever, and the illnesses and life stories I’m exposed to infect me and affect me. The search for an authentic identity underneath it all is like peeling an onion, there are layers and layers and then nothing.
As a pragmatic GP hanging on to clinical integrity in the later years of my career, it’s still part of my job to help patients make sense of their experiences in the light of all the available evidence and to offer my clinical judgement rather than acquiesce to diagnostic affirmation. After all, diagnosis is a medical superpower, and as Spiderman’s uncle Ben says, “With great power, comes great responsibility”
More reading and watching
Narratives of Health and Illness: Danielle Spencer and Andrew Solomon
Danielle Spencer: Metagnosis
Havi Carel: Illness as Transformative experience
Chloe Saunders: Identity or diagnosis?
AnneMarie Jutel: Telling it like it is: Diagnostic Narratives and Medical Power
A Better NHS 