Saturday, 15 September 2012

Where is My Voice?

Mental illness is the poor relation of the health service.  I doubt that I could find a single person involved, whether service user (I hate that phrase!) or mental health professional, that would disagree with that.  A thought occurred to me recently that, glaringly obvious though it is, is probably not often thought about in this regard.  People using mental health services have, or have had, by definition, a mental illness.  Most mental illnesses are aggravated by stress.  How then, are people with mental illnesses supposed to get their voices heard?  How are we to campaign for better, more widely-available services?

For some considerable time last year I tried to join in campaigning against the planned cuts to disability benefits.  I wrote to my MP, I blogged, tweeted and generally tried to shake the general public into the realisation that these cuts would have a significant, detrimental effect on sick and disabled people.  I read article upon article, blog upon blog, trying to educate myself and to find ways of raising the profile of the campaign.  However, unlike many of my fellow campaigners, my mental health just wasn't up to it and my depression started to be exacerbated by the struggle to get people to listen and to take seriously the very real impact the planned benefit cuts would have on some of the most vulnerable people in our society.  I had to back away from the fight, reduce my area of focus and retreat into my own small, self-centred bubble of lonely safety.

My crisis has faded a bit now, although I am still fragile and have good and bad days, so again I have started to blog.  This time however, I have been blogging not about campaigning for better services or cuts to benefits, but about my actual illness; what it's like, for me, to live with depression.  One of the hardest things about depression is trying to decide where, in the spectrum of illness and disability, you actually fit.  I have no physical disability and I look 'fine' so no one coming into contact with me would guess at my illness unless I tell them.  I make no secret of my depression, but neither do I wear a placard announcing it to the world.  It's difficult to demand treatment when you feel that you're 'not ill enough' to deserve it. I know there are many far worse off than me, so how can I justify wanting to utilise a scarce resource (therapy) that others need more?  My own, internal, self-critical voice silences my militant, political, campaigning, demanding, public voice.  My voice is not only silenced by the ignorance and lack of interest of others, stigma and discrimination; my voice is silenced by my own illness and lack of self-worth.

I attend my GP appointments every few weeks like a good girl and just manage to stop myself from the stock "fine" answer to her usual "how are you?".  But do I actually tell her how I am?  No, in my usual not-wanting-to-make-a-fuss fashion, the best I can manage is a self-deprecating "not that brilliant actually".  Why?  Why don't I tell her that most days I have at least one episode of internal screaming and fear it will never stop?  Why don't I tell her that I suppress my feelings so much for the sake of others that I feel I will literally explode?  Why don't I tell her that at least once a day I feel so tired of the struggle to keep going that I just want to give up and stop living?  Why don't I tell her that I spend so much of my time trying to be what everyone else wants or needs me to be that I've completely lost sight of who I actually am?  Why don't I tell her that I cannot look to the future at all, never mind do so with any hope?  My voice is silenced by my own need to 'act appropriately', to 'not make a show of myself', to 'be in control'; my voice is silenced by my own self doubt that my illness is 'deserving' enough to demand better treatment.

I am just one person whose voice is unheard.  How many more people are there, people like me, whose voices are lost?  People who struggle from minute to minute; hour to hour; day to day.  People who have not got the energy, strength or platform to make their voices heard?  Who speaks for those that cannot speak for themselves?  Of course there are charities like Mind, SANE, The Samaritans, The Black Dog Tribe and Rethink Mental Illness that all do excellent, valuable work and try to give us a voice; but we need to be heard as individuals and as people deserving of adequate treatment.  If people suffering cancer, heart disease, diabetes or any other widespread physical condition were routinely turned down for the one treatment that could mitigate their symptoms or even cure them there would be a national outcry.  This happens to people with mental illness every single day and no one knows; no one shouts; no one cares.  Having an invisible illness does not just mean that your symptoms are not visible; it means that you are invisible; it means that your voice is not heard.

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