About an hour ago I looked up the definition of stigma in an old-fashioned hard copy of the Australian Oxford Dictionary.
It’s a word I’d heard numerous times in conversations around mental health and even used myself a few times without fully appreciating all it meant. Of course, I knew the big broad picture that shame and ostracization are associated with mental illness, but I’d never really thought it all the way through to the nitty gritty, day-to-day ways people with mental illness experience stigma.
If I am honest this is because a big part of me had wanted to ignore or downplay this frustrating side of mental illness to the point of pretending it didn’t exist. Ignore and move on was my strategy, which would probably be a great strategy if followed by everyone. However, the reality is it’s not everyone’s strategy and the stigma associated with mental illness, although completely unnecessary and frustratingly backwards for the day and age we exist in, given all we know about health and wellness, is alive and well.
Misunderstanding and misconceptions around what it means to live with a mental illness abound and perhaps nowhere is this more evident than when it comes to the mental health disorder anorexia nervosa.
I wonder what comes to your mind when you read or hear the words anorexia nervosa?
It’s no secret I lived almost 15 years of my life with mental health issues manifested in a compilation of symptoms medically diagnosed as anorexia nervosa.
Despite how at peace and even appreciative of that time I am now, I found myself just last week hesitating over whether or not to include my lived experience while filling out an application for a Government Health position as an Eating Disorder Dietitian.
That split-second moment of hesitation surprised me.
Why? Because I realised that one piece of information out of the millions of other pieces of information about me both personally and professionally that make me perfect for the role could be perceived not as a strength but as a weakness.
To some my lived experience with anorexia nervosa may indicate I am a liability because many health professionals are still taught that anorexia nervosa is a chronic lifelong condition to which there is no cure, only relapse prevention and maintenance.
It may be the one reason they choose to not employ me and that’s a hard pill to swallow.
What’s the Dictionary Say?
In case you’re wondering what the definition of stigma is, it is this: 1. Mark or sign of shame or disgrace.
Although I no longer feel even a remote spec of shame or disgrace about the years I lived in illness I know the reason my hand hesitated to include my past on that application is because my acceptance and understanding of mental illness does not mean others are on the same wavelength.
As with most definitions this 7 word definition of stigma doesn’t offer much insight into how stigma is actually experienced in the context of daily life. Which is why I want to share with you 3 every day examples of stigma I experienced during my sick years to help you identify where stigma may be alive in your life or the life of someone you love. Because maybe if I didn’t have the ignorant opinions and misconceptions of others thrust upon me and been taught that anorexia nervosa was something to keep secret and be ashamed of maybe, just maybe I would have had access to the treatment I needed much earlier.
Maybe I’d have recovered much earlier and who knows what those 15 years could have been then…
- Everyday Stigma #1: ?Intelligence
“Come on Bon, it’s a matter of maths, you’re a smart girl, calories in equals calories out”
While I don’t remember the exact words, I remember the trapped and confused feeling in the pit of my stomach as my starved and terrified 13-year-old brain tried to make sense of these words.
The shame and humiliation I experienced at my dad’s words was crippling.
The implied message here, in case you missed it, is that you cannot be both intelligent and have anorexia nervosa. That is if you just used your logic, you’d be fine.
Truth: I was a smart girl. In fact, I topped all my maths classes right into year 12 and my first degree. What I didn’t know was what a calorie was or what it had to do with food and even if I had, a calorie calculation was not where my healing lay. My body’s fear response to food was not due to a lack of intelligence.
2. Everyday Stigma #2: Photo Swap
About a year ago I was contacted by an Instagram page that wanted to share a post about my story to “inspire” others who were living with mental illness.
I wrote a brief caption and messaged them a photo.
A couple of days later I saw the post. It was my words and a photo of another woman.
I immediately understood why the photo swap. The photo I sent was a photo of me smiling in the most gummiest of smiles all my friends know me for. The photo they traded it for was a photo of a woman looking sadly and wistfully over her shoulder.
The message here, in case you missed it, is that you cannot both live with anorexia nervosa and be happy.
Truth: most people who fall sick with anorexia nervosa live with the illness for quite awhile which means life is not hell 100% of the time and you do indeed have smiling moments mixed in, because you are in fact after all, still human.
3. Everyday Stigma #3: Misinformed Medial Professionals
I felt more than I saw the doctor’s eyes sweep my body from head to toe as he dismissively remarked “it says on your record that you have anorexia nervosa but you’re clearly better now.”
The message here, in case you missed it, is you cannot have anorexia nervosa unless you are underweight.
Truth: The reality is living with anorexia nervosa does not mean that you are perpetually skeletal.
The path to recovery is rarely, if ever linear and many peoples weight fluctuates as they make recovery attempts or they’re able to maintain some level of physical health despite living in psychological torment.
At the time of this doctor’s appointment I was a few months out of a traumatising hospitalisation, had gained substantial weight and was desperately trying to gain more. I was experiencing night sweats, my was hair was falling out, I was perpetually cold, confused and overwhelmed. I felt like the most alone person on the planet. I was still very much sick.
Anorexia nervosa is a mental illness with physical manifestations, the healing is internal.
A Future Without the Stigma of Mental Illness
I hope these examples of stigma in action from my journey with mental health help you see that what stigma is nothing more profound than those things which could easily be brushed off as harmless.
I hope that through my sharing these you gain the courage to recognise and calmly and confidently call out where stigma may be alive in your life or in the lives of those you love. Because the number one reason people with mental health issues cite not seeking treatment is fear of stigma.
There is no denying that there certainly are bigger forces at play including the medias mass portrayal of mental health, I truly believe our day to day micro-interactions have a bigger and more important role on changing the stigma associated with mental health.
You as an individual can change the story.
It is by speaking up with kindness and patience, rather than blame and hostility that we will not just stop the perpetuation of stigma associated with mental illness but more importantly because of this create an environment in which people can access the treatment they need.
It was not my dad’s fault, not the person running the Instagram accounts fault nor the doctor’s fault that they made me feel ashamed to be living with this illness. They simply did not understand what anorexia nervosa was and neither did I. After all, how could I have comprehended what was happening when I only had ignorant and misinformed people to learn from?
I can guarantee that had I not fallen sick with anorexia nervosa all those years ago I would most likely not understand what anorexia nervosa is. I would most likely be one of those who believed the dominant stigma because even now from the outside looking in it can seem utterly absurd. I can make up any reason as to why someone is doing the illogical behaviours we see as part of anorexia nervosa but until you ask them what’s going on inside their mind (because you’ll find there are some very, very, very logical reasons for starving yourself), it’s just that, made up.
All stigma is, is a misunderstanding of what mental health problems are. Therefore it is up to those who’ve lived through mental illness to show not another side but the real face of mental illness, then it is up to those who have not lived with mental illness to be open to listening and learning. Which is why I chose to include my past with anorexia nervosa on my resume’.
I imagine a future where people with mental illness get access to clear and effective care as quickly, easily and with as much compassion and as little question to their right to that care as if they presented with a physical illness.
With my whole heart I hope you found this information useful and inspiring.
Become Great. Live Great.
Bonnie.
