Being a peer worker in mental health I’m often caught in a certain tension between the reality of my own experiences, and the ‘party line’ I often feel a certain pressure to toe. One of the areas this occurs in is the many current efforts to reduce the stigma associated with mental illness.
A couple of years ago I listened to a presentation about research and psychosis that was very interesting. After the talk, I asked the presenter what I, as a ‘consumer’ could do to help. He told me that research indicated that stigma reduction campaigns that relied on increased education actually often backfired. Giving people more information about the nature of experiences such as psychosis sometimes just gave people more information about something they were already really frightened of. What did help was humanising these experiences. Putting a face to these conditions helped people to see that we are still human, that we are deserving of care and dignity, and there is so much more to us than ‘illness’. This conversation was one of the motivations for my passion for peer work.
Currently I’ve been aware of an attitude I feel I’m supposed to express, along the lines of “Mental illness is nothing to be afraid of”. Slogans like this are really difficult to get right, because you are trying to sum up a huge concept and idea into a phrase. This is like trying to communicate advanced physics concepts through haiku. It takes rare talent!
I get where this idea is coming from.
I just find it difficult to subscribe to.
I live in a funny corner of the world where most of my personal networks are peopled with people who experience, or support someone who experiences, a mental illness. In my world, issues are the norm. This is cool, I prefer it. I fit in, I get the people, we speak our own shorthand language, complain about sleep deprivation, are sensitive about touch, navigate life with a painful awareness of our own vulnerabilities. I get that the idea of telling people not to be scared is what I’m trying to communicate when I give mental health talks and say – so, guess what, I have multiple personalities and none of them are axe murderers! It’s what I’m trying to say when I give talks about voice hearing and try to get across the message that we are not some strange, terrifying, alien species; we are regular folk, who happen to hear voices. What we’re all trying to say with messages like this is that common myths about violence, insanity, psychopathy, do us harm. They’re needless and harmful fears. They alienate and damage whole groups of our communities, leaving them alone with their demons, without help or comfort. Mental illness is nothing to be afraid of.
Here’s the other side though, I know what it’s like to be suicidal, constantly, deeply, permanently thinking of death. I know what it’s like to be afraid of myself. I know the shame of waking up and finding fresh self harm wounds. I know the misery of panic attacks, of ‘ugly days’, of ‘non-food’ days. I care deeply for others who battle things like this. I’ve been the full time carer of someone who spent 6 months in hospital in a state of intense emotional distress and a constant drive to die. I’ve cared for friends who cut, or starve, who hate themselves, who experience paralyzing depressions, horrific trauma stress, chronic nightmares… To tell you the truth, ‘mental illness’ our strange, impersonal term for so much hurt and suffering, scares the hell out of me. I don’t want it, and I don’t wish it on any of the wonderful people I care about. Watching people you love suffer, watching the cycles, the decent into their own personal hell, it’s terrifying, and it’s painful.
Here’s the thing, the people are nothing to be afraid of. They’re still people. If they were assholes before, I doubt that a mental illness has improved matters. If they were decent people, in many cases it makes them difficult to live with, but not dangerous. There’s nothing to fear from them. There’s much to fear for them. And even there – there’s hope. There’s paths through these things. There’s ways to reduce their impact, to limit their capacity to destroy lives. People change, grow, heal. It’s not a life sentence. Mental illness isn’t the grave of all our dreams for our lives.
But people suffer. And people die. You can’t work in this field and not be aware of it. The situations some families are living in is horrifying. When we paint a rosy image, when we put photos of calm, happy, beautiful people on our banners and pamphlets and say – mental illness is nothing to be afraid of, we deny the reality of a lot of people who are suffering terribly. Their pain is devastating and it is something to be afraid of. Not the kind of fear that paralyses, the kind that makes us speak up about better resources. The kind that makes us research our options, get help early and get good help, look after ourselves, stay connected with our mates, fight stigma and discrimination, count our blessings.
People are suffering, and people are dying. I think it’s okay to be afraid of this. I think that in the face of this fear, we chose to act and live with courage.