Your Mental Illness? Make It Your Narrative

CN: brief non specific mentions of suicide, trauma, and eating disorders

If you have lived experience of mental illness, who tells your story?

Or even just fills in the blanks?

Silence about lived experience of mental illness from those who live with it is a frustrating paradox. Silence breeds stigma. Stigma breeds silence.

And there is a certain hypocrisy to complaining about the stigma if we choose silence.

I don’t say this lightly or without understanding the complexities of speaking out about our lived experiences.

I don’t live with an unprocessed trauma underlying my mental illness. Nor have I experienced treatment (or lack thereof) in the public mental health system. So, I have no right to speak about the ability or willingness of people to share their lived experience in these circumstances. I live with straight, white, cis-gendered, able bodied privilege. This means my path to diagnosis and high quality mental health care has been smoother than for those who don’t. All these factors make sharing my experiences easier.

One of the things I love about writing this blog is having ultimate control of my narrative. I don’t get paid for my posts. But I also don’t answer to anyone.

But I did recently have my voice stolen for a bit and I loathed the experience.

I’ve done some media interviews over the years Radio And Podcast Interviews and have generally felt empowered by and happy with the outcomes. Until this most recent one.

I agreed to it before I knew it would be written in first person based on a phone interview with me, but not written by me.

I was sent the article to fact check before it was published. The facts were correct. I hadn’t been misquoted, but it sounded nothing like me. It made me feel less than who I am. I was able to suggest some alterations. But even once my changes were incorporated the final article still felt clumsy. I would not have published it as one of my posts.

The journalist who interviewed me didn’t even tell me when the article was published. I found out when another journalist (who’d read the article) contacted me to ask if I’d be willing to interview for another ‘first person’ article written by them, about my experience of psychosis.

I politely declined. This (second) publication’s articles are sensationalist, pumped out to shock the masses and exploit the contributors. It would have been a hatchet job on my values. The opposite of empowering those with lived experience, educating those without.

I have no hesitation broaching my experience of psychosis with individuals, organisations, or the media, but only on my terms. Stories of psychosis are still in a different category to those of anxiety and depression. The media is not as used to them. They have to be handled with care and controlled by the person telling them.

I don’t even like my family or friends speaking for me about my illness. Not because I don’t trust them, but because I have more practice at relaying my experience with context and nuance.

However, disclosure around mental illness without an awareness of how to do it safely can be damaging, even dangerous. Whether you disclose your experience to one person, several, or in the media, yours and your audience’s safety must be your first priority.

If disclosure is likely to compromise your current mental health or retraumatise you, then you are not in the right space for it.

Especially if you are sharing with a wider audience you have to consider that some of that audience may be living through an episode of mental illness at the time of your disclosure and be particularly vulnerable to any information you share.

Content notes at the beginning of any article or interview containing triggering subjects for example suicide or trauma give your consumer the choice about whether they feel well enough to read/watch/listen on.

There are safe ways to relay distressing experiences to your audience. For example sharing an experience of a suicide attempt can help open up vital conversations around suicide and lessen stigma. But sharing explicit details about methods can be harmful to anyone in your audience who may be experiencing suicidal ideations. Similarly specific details about body weight, diet, or exercise should be left out of a safe disclosure around eating disorders.

Sharing your experience of mental illness is a personal decision. You have the absolute right not to.

But think about this – If you live with a mental illness and choose silence, you are leaving a space, for someone else less qualified to speak for you. A hole shaped like you, to be filled with more stigma.

If we give the world a void instead of our voices, it will fill it with its own assumptions. So, if you are well enough and able to do so – set your terms and boundaries, choose your conduit and gift the world your story.

I decided not to publish the link to the external article mentioned in this post. If you are interested in reading it to compare its style to my usual posts feel free to message or email me and I will share it individually.

You may also be interested in:

Media-Made Monsters

Don’t Call Conspiracy Theorists Crazy

Vulnerability And The Exploitation Of Kanye West

Tokenism In Mental Health Awareness

Written for QLD Mental Health Week 2020

Saturday 10th October is World Mental Health Day and I feel a little conflicted about highlighting it. There are a lot of positives to having dedicated days or weeks to draw our attention to mental health. But I also believe we need to approach these awareness days with a little caution. It’s too easy to post or repost something related to the topic, tick the box of doing good and move on with our days.

Ironically these tokenistic efforts are becoming more common as awareness around mental ill health grows, especially when we don’t have to move beyond the comfort of our keyboards to feel as though we are achieving change. Of course it is good that there is more awareness, tolerance and marginally less stigma surrounding mental ill health than there was fifty or even twenty years ago. But we have to make sure we don’t replace the old insensitivities with their more modern counterparts.

I have written about my dislike of RUOK day before RUOK Day: Full Disclosure and this year I heard another perspective that reenforced my reasons for disliking this day. When I am well, my psychiatrist appointments usually consist of me requesting scripts for any medications I am running low on, a brief check in with how I’m going and then we chat about the state of the world, my advocacy work, his psychiatry work. This year one of my appointments happened to fall around RUOK day and we talked about the pros and cons of this day. I expressed my opinion and my psychiatrist referenced one of his patients coming in on RUOK day in distress because they were bombarded by people they knew asking them if they were ok. People they didn’t hear from for the rest of the year. People who were probably well intentioned, but using them as the token mentally ill person in their lives, to tick the box of having asked: RUOK?

Awareness around mental ill health should not be confined to one day or one week of the year. Episodes of mental illness flare unpredictably and feel as though they will never end. This feeling is fed by the fact that no one can tell you when it will end. There are good days and worse days. There are days when the risk of it turning into a terminal illness skyrockets. Someone may have a spectacularly good day on RUOK day, a calm and uneventful mental health week, but be suicidal sometime in April or on Christmas day, when it is all too easy to be under the impression that we showed our support for those among us living with mental illness back in mental health week, and Christmas day is busy and by April we are into Caesarean awareness month and IBS awareness month.

 So what can we do to be meaningfully aware of the impact mental ill health has on those of us who live with it, and what can we do to support them for more than a day or a week of the year?

Everyone who lives with mental illness is different and everyone’s experience is different even if they live with the same diagnosis. So, I don’t speak for everyone.

For me – I don’t need to be asked how I am. I have enough insight into my Bipolar 1 Disorder to know when I need to seek help. I am fortunate to have good support systems in place, so I don’t tend to feel lonely or isolated.

For me it is all about the language people use. Hearing or seeing stigmatising language either in the media, on social media, or spoken, punches me in the gut. When I am confronted with words like nuts, crazy, lunatic, psycho, mental institution, – the list is long – it belittles me. It strips away the facts of my life, my healthy functional relationships, my personality, my university degrees, my profession, my interests, my sense of humour and it reduces me to a hellish caricature of who the misinformed masses believe someone mentally ill is.

So, think about how you write and speak around me. If you hear or see someone else perpetuating stigmatising language around mental illness, call it out. Do so politely, but raise awareness of it. I do it as often as I can, but I also get tired of being told to shut up, get over it, or that I am overreacting.

Perhaps the most helpful thing you can do for someone in your life who lives with mental ill health is not to automatically ask them how they are, but to ask them what you can do to make them feel valued and supported all year round. They may answer: ‘Ask me how I am’ in which case you are doing it meaningfully and mindfully, not because it is a certain day of the year.

All that said, Happy World Mental Health Day everyone. In honour of it also being Queensland Mental Health Week from 10th-18th Oct I am aiming to drop a few additional posts in Thought Food this week.

Look after yourselves and each other!

You may also like to check out:

RUOK Day: Full Disclosure

Mind Your Language Katy Perry

Don’t Call Conspiracy Theorists Crazy