Causing stigma by highlighting stigma? A lesson from Twitter

Russell Delderfield in the following blog post explores and problematises the issue of stigma and eating disorders, within the context of exchanges he had on the social media site Twitter. 

Russell D pic

Image by frankieleon (Creative Commons License) 

I have recently had the wind knocked out of my post-PhD prideful sails. I studied male eating disorders using qualitative approaches for my doctorate.

The issue of stigma arises constantly in the research I read and conduct. It feels as if there is no avoiding it. It is pervasive and un-ignorable. I cannot possibly ‘choose’ to set it aside and not engage with it. Yet, when it appears in psychological publications, the treatment of it (within my field, at least) is dissatisfying. The inferences seem to start from a hefty assumption: that ‘stigma’ is a coherent, unified ‘thing’. And more importantly, that it either exists – or doesn’t. In addition, there is a kind of unwritten imperative that I experience. This asserts that mining the data for its evidence about stigma and presenting this to the world is a good thing; it helps to hold it up to the light for further keen observation. And this is where our dilemma begins.

Let me backtrack and fill in some gaps at this point. Whilst I qualitatively explore  men’s experiences with eating disorder, I’m not entirely alone. There are other clinicians, psychologists and psychiatrists who investigate  male disordered eating. A small number of studies have been published that try to improve our understanding using qualitative methods (I count 6 in my collection, thus far). Although I do not profess to specifically examine stigma in male eating disorders (my interest is broader than this alone), some of my participants share stigma they encounter.

During my PhD, I wanted to address the cursory and superficial coverage of stigma that I perceived in other work. So, I did something that no other person has done (at least to my knowledge) within my field. I did not simply report on the existence of stigma and select some careful quotes from the data to illuminate what men had been through, I took the study of a couple of men’s experiences back to its ‘roots’, with a Bordo-esque exploration of what this stigma meant to these men. I explored stigma through the lens of spoiled identity. I asked, ‘What does it mean to the man to live with stigma?’, ‘What does the experience of stigma mean for a man’s masculine identity?’, and ‘What does the avoidance of stigma mean for a man’s masculine identity?’

This, for me, emulated the ethos of feminist eating disorder work where there is an established history of women and researchers sharing their stories of ‘spoiled’ identity, objectified womanhood and the meanings of what it is to be an anorexic, bulimic or binge-eating woman. I formulated a useful exposition of what spoiled masculinities mean and feel like for men living with an eating disorder. This went beyond simply saying ‘men report they experience stigma and here’s an example of the stigma they had to deal with.’ Finally, I was satisfied. This laudable and novel achievement was a source of pride. Job done (at least for now, I’m not naïve enough to believe that qualitative work is finite).

Well that was then, and this is now. Over the summer a fellow researcher tweeted about a BBC News report that asked why men who have eating disorders keep it a secret. I was straight on the case. I retweeted with my usual ‘awareness-raising-challenge-the-stigma’ gusto. In a painfully cropped 140 words, I said that stigma is one reason that men do not speak out. I tweeted that I knew this due to my qualitative research with the men themselves. I encouraged others to face-down this stigma that can be so debilitating.

And I was challenged in turn. One of the men who has an eating disorder, who follows my research on Twitter, contacted me to raise something that I had not thought of before. In my positively proselytising mission to campaign against the damaging effects of stigma (important as I still believe it is), I had overlooked something. One tweet was all it took:

twitter“I sometimes wonder if (only) talking about how men with EDs feel stigmatised teaches men with EDs that they should feel stigmatised…”

I was floored – both as a man with an eating disorder and a researcher.

I wonder how many men feel similarly? I wonder if it is true that holding a mirror to the nature and effects of stigma simply serves to perpetuate it? In my empowered role as researcher I had overlooked something that, once said, seems so obvious. How could I not have thought about this before? Am I part of the problem, instead of being one among many cogs of the solution?

I didn’t despair for long. My interlocutor and I had a thought-provoking exchange of views. I learnt something extremely valuable. This is the very substance of what critical psychology embraces: it acknowledges the fallibility of research because it is carried out by humans about humans for humans. It challenges the monadic perspective of psychology and the monolithic nature of published research studies.   In many ways, the fact that people actually respond to my research on Twitter, rather than just passively consuming it, means that my work finds meaning somewhere. Talking about my research findings with the public leads to dialogue and a shared understanding of my single researcher experience.

However, I’m still left with a dilemma. I accept the proposition in the tweet but I do not have an answer as to how do we erode the deleterious effects of stigma, if we do not highlight the concept and the role it purportedly plays in preventing men from getting help. As a researcher, I must make sense of the potential consequences of my findings. Is uncomplicated campaigning for improvement unequivocally beneficent? I thought so, but I don’t anymore. I set out to redress the lack of complexity in male eating disorders research when it comes to stigma (amongst many other things). In turn, this bred further complexity because it created an unforeseen conversation.

Unforeseen, but not unwelcome: it’s a lesson that I appreciated learning.

Dr Russell Delderfield
University of Bradford
@MaleEDResearch

Earrings – and what they tell us about medicalisation

In this moving and personal blog post, Wendy Stainton-Rogers explores her experiences of the meaningful everyday practice of getting her ears pierced. Wendy connects this with her experience becoming, and remaining, the medical subject and object due to serious illness and disability.

Wendy for blog post pic (cropped) (1)

Three weeks ago I went into a jeweller’s shop in a busy shopping mall and got my ears pierced. It was on my ‘day out’ to celebrate my 71st birthday. Possibly a bit of a weird thing to do at my age, but not that big a deal surely? Actually, for me it was a very big deal. It was the first time in years that I had got something done to my body for a frivolous reason rather than for a medical one.

In 2011 during a biopsy to see if I had cancer, my bowel was accidently punctured and, a day or so later, I felt dreadful and my temperature skyrocketed, the alarm was called and I needed to have many hours of emergency surgery to deal with the septicaemia that had ensued. From that point on my life changed dramatically and I became highly medicalised. I was incredibly compromised, ill and weak and totally dependent. For several years after that, surgical catastrophes followed, one after another and my life became completely dominated by medical procedures. These ranged from the minor ones – such as regular ‘obs’ (observations – the taking of my temperature, blood pressure and pulse throughout the day and sometimes all night too), through constantly having routine cannulas fitted and being sent for all manner of Scans, X-Rays and Ultrasounds, to very invasive procedures, such as having a Hickman line fitted (more on this later). This powerful medicalisation of my body, my life and my consciousness was intensified in the weeks and days following  two further lengthy surgical procedures attempting to get rid of the cancer.  Each time I ended up in intensive and then critical care, linked up to a barrage of machines, with a dedicated nurse constantly looking after me.

As a health psychologist, ‘medicalisation’ is a word I had certainly read about and even written about, but it signified little to me of the enormous impact of what it can do to a person – that is, until I experienced it for myself. The days of horror are over (I hope!) but I am left disabled in some interesting ways, so my life is still dominated by medicalisation. The outcome of all that went wrong with my body is that my gut was destroyed and I have a condition called ‘total intestinal failure’. This means I have to have artificial food supplied through the Hickman Line – a tube that enters my body just at the top of my left breast and goes into my bloodstream near my heart.

Every night my line has to be ‘put up’; that is, attached to a ‘giving set’ (another tube that is joined up to a 3 litre bag of liquid food) via a pump, so that the food I need to keep me alive can be pumped into my body. The pumping takes about eleven hours. ‘Putting me up’ is a fine-tuned procedure that Robin (my husband and my carer) and I do together, following strict instructions to keep the line sterile (it took us three weeks in hospital to be trained to do this). An infection in the line is potentially lethal, and leads to immediate hospitalisation and what my GP calls ‘scary antibiotics’, so we are very vigilant to make sure we get it right.

These hours of food pumping rather mucks up your day! The eleven and a half hours of ‘putting up’, pumping and ‘taking down’ is an invariable constant that has to be built into my life. At first I spent all of the time in bed, but it’s much easier now that I have a smaller stand that is easier to manipulate. I can have my food pumped into me anywhere I can get it to so I don’t have to be in bed. At one conference I wheeled it into the bar, making life much more sociable.

This kind of intrusion into one’s time is one of the strongest downsides of being medicalised. It’s all too easy to talk blithely about people having procedures like, say, chemotherapy or renal dialysis and to not to properly realise the enormous impact the way in which it devours time for the person concerned. It is totally life-limiting and intrusive.

Medicalisation has many, many facets in addition to eating into time. Another is what it does to your identity. So – back to the earrings. They used, in the past, to be very much part of my ‘style’. I have a gargantuan collection of earrings – elegant ones to wear to job interviews, flamboyant ones for parties and dancing, deeply emotionally meaningful ones that I had been given to mark special days – the list goes on and on. But through all the horrors and tribulations of hospital treatment earrings were clearly not something I could wear, and even when I got home, for a long time I was just too weak and clumsy to get them in. So my piercings closed up, and for a long while I was so sensitised to the need to be sterile that I couldn’t contemplate having my ears pierced again for fear of infection. So my ‘birthday treat’ was, indeed, a really, extremely, fabulously and magnificently big deal. And now only a few more weeks to go and I can be as frivolous with my ears as I want. Hallelujah!
Notes

1 Picture kindly provided by Wendy Stainton-Rogers to accompany this blog post.