diagnosis and identity image of red moon and brown/white feather against woods

Diagnosis & Identity – Part 1

Content Warning: Mention of abuse, hospital, mental health inpatient abuse, including conversion therapy, LGBTIAQ+ abuse, racism and BIPOC/BAME abuse.

A diagnosis is the moment that breaks the timeline. Before becomes…before. Now we are firmly in ‘after’ and what’s before us here might be beyond what we could ever have imagined, ‘before’.

Diagnoses can save, change and split lives.

A diagnosis can become one of the most significant ways in which we identify ourselves. Often, in medical environment and interactions, a diagnosis can feel like the only aspects of us to which attention is paid. 

But for all their import, a diagnosis is not just medical, but political. Diagnoses are presented as facts, but diagnoses are only as accurate as our medicine, research and practice. Medicine is always striving to improve and as it does, diagnoses change. What was once considered a symptom of one condition may now be considered to be part of something else entirely. Until relatively recently, ‘homosexuality’* was considered to be a mental illness, with barbaric treatments to ‘cure’ this ‘deviance’. 

Art therapist and lesbian disability activist Connie Panzarino wrote about her experience of being told by a doctor that the diagnostic label for her physical experience had been changed. She points out that no one asked her and how it felt to be shunted from an identification, an identity she was familiar with, to a new category.

Writer Esmé Weijun Wang writes movingly of her experience with diagnostic labels in her book, The Collected Schizophrenias.

Diseases have many different labels, definitions and symptom profiles than 5, 15 or 50 years ago. Is a diagnosis simply our best guess at this point? What happens when medicine moves onwards?  

Diagnosis as Triumph  

A friend text me last week, sharing news they are deeply excited about: after years of dismissal, erasure, minimisation and judgement; they finally have an accurate diagnosis.

They are relieved and overjoyed.

The diagnosis isn’t something that is ‘curable’ or even necessarily ‘treatable’.

The mechanics of their day to day life won’t shift drastically – they’ll still use mobility aids, still experience their impairments in the same way, still be disabled. But internally, the difference is tremendous.

A diagnosis can validate it, witness us, give edges and a name to be scary things happening to our bodies. If it has a name, it is seen, categorised, delineated, assessed and with that assessment are limits and boundaries. For the fear in an ‘unruly body’ which transgresses the usual bodily boundaries, this can feel libationary. 

I don’t mean this as anti-medication or anti-psychiatry, to trivialise the suffering and seriousness of many diagnoses, nor to discourage anyone from medical support and working with their doctors and medical professionals.

Instead, I’d like to invite us each, if it’s something we’d like to explore, to see a more rounded picture about our diagnoses and how they impact our identities. For me, diagnosis is the key that can get you access to services, it can be an answer to life-long questions, the part of ourselves that makes everything else make sense.

A diagnosis can be a part of our identity, a positive part, an ambivalent part, a painful part and more, sometimes all together. 

What does it mean to have a diagnosis?

Do you internalise it?

Start to live it?

Does it affect your healing trajectory?

What does it mean not to have one?

How does it intersect with the other identities, labels and marginalisations you live with and as? 

So much in our culture comes from the medical model. The medical model (of disability as opposed to the social model) orients the problem inside us. I absolutely resist this total individualisation of wider social problems. Much of our lives, including diagnosis has a biopsychosocial component, as far as I understand it.

(I will be expanding on this in my next essay in this series, Diagnosis and Social Justice). 

Diagnosis: A Reflection of Body or Society?

The concept of a diagnosis not being an unassailable fact is significant, because our diagnoses impact everything from the treatments we receive, to the money we are able to live on. And the diagnoses themselves may be socially and politically influenced. 

In a recent seminar by a UK NHS psychologist at my counselling and psychotherapy training college, she told us that in a man and woman presenting with the same symptoms, a man was more likely to be diagnosed with Post Traumatic Stress Disorder – a serious condition, but considered treatable. Whereas a woman was more likely to be diagnosed with Borderline Personality Disorder, a condition some describe treatment of as ‘like trying to write on water’ and is often (unfairly) seen as untreatable.

We see people of colour/black minority ethnicity people diagnosed differently to white men presenting the same symptoms. 

(I am very aware of the binary gendered limitation and lack of intersectionality of this example. I don’t believe gender is binary. Or that there is a default ‘man’ or ‘woman’, or that blackness, faith, disability, presentation, class and many other aspects of being human don’t intersect with these aspects. I know they do. It’s currently the only example I have, please let me know if you have others. I think this speaks to larger issues in itself.)

It should be noted that many research studies into mental distress explicitly exclude participants who have other medical conditions, despite the fact that such participants make up the bulk of the population experiencing forms of mental distress such as schizophrenia (Jeste et al., 1996 cited in Morris, 2004b). As a result, this erases the voices of disabled people who are also experiencing mental distress (other than depression ‘caused’ by impairment) – Morris, J. (2004b) People With Physical Impairments and Mental Health Support Needs: A Critical Review of the Literature, York: Joseph Rowntree Foundation.

Until 1993, much drug testing did not include menstruating people, women, femmes or people of colour as menstruation was considered to interfere with the testing. Drugs designed without including POC and Women in the drug trials, certainly not people with multiple disabilities, trans people. Yet they could all be prescribed the drugs. 

“Although there is recognition today of the need to include women sufficiently in clinical trials, in previous decades the consideration and inclusion of men overshadowed women in clinical research design and conduct.2 This was observed when studying diseases prevalent in both sexes, where males, frequently of the Caucasian race, were considered to be the “norm” study population.1,2  …They also viewed women as confounding and more expensive test subjects because of their fluctuating hormone levels” – (Liu and Dipietro Mager, 2016)

Racism has been shown to impact drug prescriptions, in a study on the effects of ethnicity on prescribing practice and treatment outcome in inpatients suffering from schizophrenia in Greece, in 2011, “non-Greeks were less likely to receive SSRIs-SNRIs and more likely to receive benzodiazepines.” (Douzenis et al, 2011). In other words, they were sedated, rather than treated.

Diagnoses have historically been impacted by the norms of the time, thankfully these get updated but I wonder what norms are influencing our healthcare now and the impact they may be having?

What is the take-home message here? 

Diagnosis is political, not just medical. This can impact us in many ways, this essay is just beginning to explore those by looking critically at the concept of diagnosis.

To look critically at the concept of diagnosis; it can be empowering and challenging. Like us, our diagnoses are impacted by our environment. It’s not simply about our ‘unruly bodies’ but where these very bodies meet the wider systems and the dynamics therein.

This critical reflection on diagnosis is, in itself, a subversion of the ‘critical’ glaze which chronically ill and disabled people are often subjected to by the medical model. The medical gaze can (all too often) pathologise and objectify our struggles and difference with judgement.

Where can you reflect safely on these questions and explore your relationship with diagnoses you have? Or answers/diagnoses you may be seeking? I wish you support in your reflections.

N.B: This essay series is to introduce some of the topics we will be working with this Autumn in my flagship programme The Phoenix Fire Academy. You can get more info here. Sign up to the newsletter to be notified when the next essays in the series are published. 

  • As opposed to recognising all the many folx in gender and sexual diversity and LGBITAQ2S+ communities.