Wednesday, January 25, 2017

When talking hurts

Personal disclosure is necessary, but can still disadvantage us.

By disclosing we help each other and we make it OK to talk. But stigma can’t be solved by disclosure alone. It’s unrealistic to believe there aren’t still personal risks to disclosure, no matter how much we want it to be otherwise. It can still disadvantage us. “Us” being the nebulous, diverse, extremely varying body of people affected by mental health issues. Or depending on how you prefer to frame it, the mentally ill. 

The hardest thing to convey about mental illness is that illness, like health, is a continuum. It is not a binary state – well or not, ill or not. How do we compare health? How do we compare and evaluate sickness? What does it meant to be diagnosed? Is “diagnosis” a static state? We know that a lack of diagnosis does not mean a lack of illness.

I’ve been fairly fortunate and feel privileged to have not experienced as much stigma or discrimination as others have related to their mental illness. I know there are a variety of intsercting reasons for this. I have always been pretty open with my struggles and have attempted, at least, to be frank and offer disclosure slightly ahead of the curve of increasing social acceptance and mainstream discourse of mental health issues. A friend, someone I really admire when it comes to her disclosure about mental illness, called me a pioneer once. That meant a lot to me. Still, I find myself holding back a lot of the time. I find myself unable to disclose or share with the frankness of some in my network, some whose disclosure I admire, and empathize with, and have received real and tangible comfort from. Because the stigma is very, very real.

And while I hesitate to align myself in a facile way with the new wave of discourse on “what it’s like to be high functioning” or brand myself as someone who “you wouldn’t believe is ill!” because the last thing I want is to promote and perpetuate a dichotomy: a dichotomy between those who experience illness but not so much stigma, and those who, because of the nature and severity of their experiences and/or various intersecting ways they are marginalized, truly bear the brunt of societal stigma. The fact that people have been surprised when I disclosed I experienced illness was intended to be read, by me, as some sort of compliment. I get the intention, and appreciate how you see me, but it’s a weird experience.

But we cannot hierarchialize levels of “functioning” among ourselves, which can serve to compound the stigma for those who are, at times, “low functioning,” whatever that means.

We’ve all been there. Illness is fluid.

How do we, who experience illness, show compassion and allyship with those who also experience illness but experience levels and impacts of stigma in different ways?

I’m thinking about this because I recently felt extreme and upsetting discrimination as a result of bureaucratic, institutional stigma. The kind of stigma we justify and protect because “well, that’s just the way it is, the way it has to be!” Within our mechanisms of evaluating and understanding health and risk, we have not erased mental illness stigma. We have not found a way to bring nuance into rubrics and standardized forms. Without delving too deep into an experience that was truly triggering (a phrase I don’t use lightly), I did an insurance related interview and disclosed my experiences with mental illness.

I disclosed because my illnesses – depression and anxiety – are well documented within the medical industrial complex. I’ve lived more than half my life somewhere on the continuum – being treated, not being treated, feeling ill, feeling well, feeling like my illnesses are latent or in remission. How do you answer yes or no questions about mental illness and treatment? What is “being treated?”

When was your last episode?

How frequent are your episodes?

Have you ever had suicidal thoughts?

Plus complete disclosure on medications, frequency, dosages, etc.

Once you’ve been sick, are you always just post-sickness? A mental illness survivor? Do I ever get to reset, or will my medical history haunt me forever? 

How come we often don’t see mental illness as on par with physical illness when it comes to support and access to care, yet we conflate it with physical health when convenient?

I disclosed I have a prescription – primarily used for insomnia these days – that I use infrequently. It takes me about a year to use 20. Doesn’t matter – that means I’m medicated.

I disclosed that, after almost two years without daily medication, I asked my doc to try a new prescription. I went so far as to fill it a few months after getting the prescription, and ultimately decided not to use it. I’m very, very pro medication and think it can be a great help. It has been for me at various times. But it didn’t feel right for me now. Yet I disclosed. I tried to convey the nuance. But there is no room for nuance when it comes to standardized evaluations of sickness or health, so it counted against me. As did the mere two months of free, sporadic, university counselling centre counselling sessions that I undertook before I finished my latest academic program.

Undertaking medication and or counselling should be viewed as indicative of healing. Of trying. Of taking action. Of wellness! Yet for this purpose, disclosing meant I was sick. And within this institutionalized framework of assessing my health, it was allowed, it was OK, it was even legislated, to stigmatize me. So I was declined this insurance. Even though my illnesses are (gratefully) not affecting my ability to work and participate. Because being anywhere on that illness spectrum made me risky, even though, we know that mental health is a fluid, every changing state, something we all, with or without diagnoses, need to work at and maintain. There is no 100 per cent mentally healthy person to compare ourselves to, is there?

It hurt because I’ve been so fortunate to almost never, in almost 30 years, feel dehumanized because of my mental illness. I’ve had friends and bosses and coworkers and professors who saw me as a whole person, a dynamic, strong, resilient, motivated person. I’ve been so privileged to go through stretches where my illnesses have not needed to be a part of my identity in any public, social way – where they were under the radar. Not concealed, just not relevant. My illnesses have very, very rarely affected my motivation, concentration, and ability to work and complete my post-secondary education. 

I know I am fortunate. Still, sometimes they affect various aspects of my life. Sometimes I have no energy at all. Could it be the staggeringly challenging and frequently forgotten-about physical symptoms of depression? Or my anemia and vitamin deficiency? Or a long history of simply being really busy and doing a lot of stuff and exhausting my body? Who knows?!

We have to talk about mental health. I, like many of you, feel a responsibility to disclose, especially if sharing the knowledge of my experiences, my ebb and flow, and my various recoveries, helps someone feel less alone and more hopeful. We need to remember that many among us feel they cannot disclose and share. 

When encouraging people to talk, we need to remember that talking can hurt. It can hurt some of us more than others. But not talking is not the solution.

And if we ask people to talk, we have to be prepared to listen.