RUOK Day: Full Disclosure

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Doing the talking, not the asking on RUOK day 2019

 

How was everyone’s RUOK day? Did you ask anyone? Did you get asked? Did you post or share something on social media about it, and feel good about participating?

As someone who lives with a severe mental illness I felt as though I should welcome RUOK day with open arms, that I should be thankful that someone was paying attention to ‘us’… for a day.

But I didn’t feel what the day wanted me to.

What did I feel? For starters, a little infantilised. And please before people send me enraged messages that that is not how they felt and that I am spoiling the fun for everyone, hear me out.

RUOK is like Lifeline but the person asking has no training in how to respond. Like Lifeline it champions suicide prevention. But it is not about fostering awareness of mental illness or reducing the stigma around it.

Suicide prevention is a complex beast. I believe suicide prevention programs have more success for people who are suicidal because of situational factors, not because the suicidality is a symptom of mental illness.

Asking people with an underlying mental illness if they are ok on an assigned day or on any day is a nice gesture. Just like it is a nice gesture to ask anyone who lives with any chronic, intermittent, potentially fatal illness, (or anyone for that matter) how they are. But it won’t improve their long-term quality of life.

What will?

Access to great quality mental health care that will get them a diagnosis (if there is one for them) and then consistent appropriate treatment.

My concern is also this: If you have a mental illness and are asked RUOK? and you are not, the person who asked you, is unlikely to know what to do with that.

And what about the people handing out RUOK balloons and spruiking coffee – are they anymore qualified to deal with a ‘No.’

No, they are not. They have hopefully at least been trained to refer people. But where to? A broken public mental health system that fails people living with mental illness and their families every day. So, asking RUOK can open a can of worms for the person asking, because the answer to that question is much more complex than yes or no.

Returning for a moment to me feeling infantilised by the RUOK concept. I am thirteen years into living with severe mental illness, which is well managed. When I am asymptomatic for 2-3 years at a time I am ok, better than ok most of the time. I could do more for most people without mental illness by asking them if they are ok, than they could for me by asking me.

When I get sick it happens within days, sometimes hours. I know it’s happening before anyone else around me, because I know the inside of my head better than the inside of my handbag. And I take action. Immediatley. I see my psychiatrist, who I work with to decide the next best step. For me, often that means going into hospital.

I don’t need a stranger asking me how I am. I don’t even need close family or friends asking me, because it will be me informing them that I am not ok, and I am off to see my psychiatrist.

I am not saying RUOK day is worthless. It’s not. But it is kindergarten level advocacy. It was a great start into opening up conversation around mental health when it originated 10 years ago. It is better than nothing.  But we need to have come further than ‘better than nothing’.

If we had effective mental health advocacy and care, we wouldn’t need suicide prevention days or hot lines, or there would be much less pressure on these services because we would be dealing with the mental illnesses causing the majority of suicidality in people, long before they got to the point of experiencing suicidal thoughts and ideations as a symptom.

Suicide awareness and helplines are the palliative care of mental health care and advocacy. Providing a listening ear can be helpful, but it will not solve the underlying problem. In the same way that pain relief and anti emetics can make a terminal cancer patient feel better for a moment, these adjunctive treatments do nothing to avert the terminal nature of the illness.

You know that analogy of a duck gliding across water smoothly and calmly while underneath their legs paddle frantically. RUOK day is an upside-down duck. We seem to be paddling with our legs in the air creating splashes but going nowhere, while under the water, where the underlying problems lie, not much is moving.

The power of disclosure

So, what did I do on RUOK day? I didn’t ask anyone if they were ok, because I do that at least once a day every day when I interact with people.

Instead I rode the momentum RUOK day brought with it, to do what empowers me in my mental health advocacy.

I shared.

I believe the real power and force for change lies not in asking RUOK – but in disclosing our experiences of mental illness, even if it is challenging for us.

On Thursday I gave a corporate presentation as part of my role as a SANE Peer Ambassador.

I have disclosed my experience both formally and informally many times.  I carry not an ounce of shame when I talk about being so unwell with psychosis, I denied knowledge of my husband and daughter, or that I have spent months in hospital on high doses of medication, having ECT.

I am practiced. When I talk about it my head is crystal clear and my voice is confident…But I am still vulnerable. My brain can logic its way through these presentations, but it transfers the stress I deny experiencing, to my body in the lead up.

Headaches and gut upsets remind me just how vulnerable I need to make myself to sit at the head of a very long, shiny imposing board room table with 180 degree views of tall city buildings and to recount what it is like to go from being so broken to today, to a group of people I’ve barely met.

But I would rather do this a thousand times over asking people if they are ok because it’s RUOK day. Because if they answer yes it means they are either not comfortable to disclose or there’s nothing to disclose. And if they answer no, I have nowhere to refer them to with a clean conscience. I feel I achieve way more disclosing one on one or to a group of strangers than I do asking people if they’re ok. Here’s why:

Take Thursday’s presentation. I can almost guarantee if I had asked the audience members individually, before saying anything,  if they were ok the answer would have been ‘yes’ in the same way we all answer ‘yes’ when a check out operator asks us how we are today. (I find this question and interaction so meaningless I now always use a self-serve check out.)

Instead, this happened: I presented my experience as part of the presentation.

Afterwards several people came up to me and disclosed their experience of mental illness or that of someone close to them. We connected on a much more meaningful level than the yes or no answer to RUOK.

And I can almost guarantee that if I hadn’t made myself vulnerable first, I don’t think these people would have. I can tell you from experience (not only on this occasion) that there is almost always someone who identifies with what you are saying whether they tell you or not.

So why am I telling you what I did on RUOK day?

One of the audience members on Thursday commented that I was ‘brave’ to share my experience. I know this is usually well intentioned, but it makes me uncomfortable. I think the ‘bravery’ it takes to get up and share my experience is nothing compared to the bravery it takes to survive that experience and emerge on the other side well enough to share it.

It also reflects to me that not enough of us are opening up about our experiences, if those who do are hailed as ‘brave’.

Content note: Skip the next two paragraphs if you are experiencing symptoms of mental illness or are feeling raw at the moment. It contains some tough love.

If you have lived experience of mental illness and are currently asymptomatic, and have ever thought the stigma surrounding mental illness is unfair, that living with a mental illness is unfair, especially if, like me, you are white, straight, and can afford not only a roof over your head, food on the table and private health insurance, and you haven’t been beaten to a pulp by the public mental health system – consider this: you can reduce stigma by sharing your experiences with others. You can do more than just like or share the endless inspirational quotes about mental illness on social media.

To be brutally honest: Yes, being landed with a mental illness is shit, but if you are ever fortunate enough to be well enough between episodes of illness, you may as well do something with that shit experience. Because you will be helping those less fortunate among us who are either marginalised or just never well enough to advocate for themselves.

Sharing can be uncomfortable and scary. But change doesn’t come from staying comfortable. Change comes from stretching ourselves – not to the point of breaking – but definitely to the point of discomfort. Those of us living with mental illness must take care. Sometimes the distance between being stretched and being broken is minuscule. But that doesn’t always mean we can’t stretch. We may have to adjust the degree and length of the stretch, but we can still do it. And when we do, it can dissolve some of the powerlessness that our mental illnesses can cloak us in.

When we disclose, others disclose in return and then they are more likely to be the first to disclose on their next interaction. It’s a ripple effect.

And you can choose to be part of it.

You may also like to check out these posts:

My Sliding Doors Encounter With Our Public Mental Health System

Suicide Watch

Where’s Your Comfort Zone?

What a mental illness can teach you about your mental health

Visiting Someone In A Psychiatric Hospital?

 

 

Author: anitalinkthoughtfood

Writer, Mental Health Advocate, Veterinarian For more, visit me at Thought Food.

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