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.

Online Support

I have suffered with depression for, I think, about 9 years.  I can’t pinpoint exactly when it started as you don’t just wake up one day with depression; it creeps up on you unawares.  What I can do is pinpoint the exact moment I realised I needed help.  One day I went into the local village shop after dropping the children off at school.  The lady serving that day was a friend and she greeted me, as she always did, with a warm smile and a welcoming hello.  Her easy cheer stopped me in my tracks and I was in tears before I had even made it out of the shop.  I cried all the way home and it was all of a sudden glaringly obvious to me that my reaction to someone else’s happy, relaxed nature was completely abnormal.  I was way more than unhappy; I was so desperately low that someone else being normally, every-day, happy threw my own feelings into such sharp relief that I could no longer ignore them.  I called the doctor as soon as I got home.

I was severely depressed by the time I sought help.  I had been sinking lower and lower each day for months and months and by the time I realised I was virtually catatonic.  My condition was made worse by the fact that I also had extremely low iron levels in my bloodstream, which rendered me physically exhausted in addition to the mental maelstrom I was experiencing.  Each day I got up and got the children fed, dressed and ready for school.  As soon as I’d taken them to school I’d go home and often either go back to bed or sleep on the sofa until it was time to collect them.  After the day I was woken by a phone call from the school fifteen minutes after I should have collected my youngest, I always made sure I set an alarm, even if it was 9.30 in the morning when I went to sleep.  I’d collect the children and then play ‘Mummy’ until after tea, when I’d crash again and my husband would take over for a while.  During this time I tried very hard to ensure the children were cared for.  I always kept the washing up to date and made sure there was food in the house, although going to the supermarket was, and still is sometimes, extremely traumatic for me.  I am conscious though that they did suffer during this, my darkest period as I was not able to interact with them as I should have and I regret that deeply.

The medication the GP prescribed me, antidepressants and iron supplements, gradually dragged me out of the worst of the dense fog but I reached a plateau in my recovery after about six months and I felt I needed more than just medication to help me.  I was fortunate that I was able to (not quite) afford the private psychologist that my GP referred me to.   He was great and really helped me to address some of the issues that were contributing to my illness.  Sadly, part of this process led to the end of my 18 year marriage, which was incredibly painful for all concerned.

I have never returned to that absolute depth of long-lasting, non-functioning depression but nor have I succeeded in achieving the recovery that my GP assured me was possible all those years ago.  I have had periods, some as long as several months, of being relatively symptom free but by and large my depression has stayed with me, colouring all aspects of my life.  I have good days and bad days and have pretty much resigned myself to living with depression for the rest of my life.  I am no longer in a position to be able to pay for therapy and, as therapy on the NHS is virtually non-existent, having online support has really helped me to cope with my condition on a day to day basis.  There is, of course, no joy in knowing that other people also suffer with an illness that drains the pleasure and energy out of them most days, but to know that others understand exactly what you mean when you describe how you are feeling can take some of the pressure off.  Having my feelings validated, affirmed and understood makes me feel more able to keep pushing for the help and support I know I need. 

My illness can often make interacting with people face to face extremely difficult, or even impossible, for me so access to support online has proven invaluable.  I read a lot of mental health blogs and follow many people on twitter that also have various mental illnesses and all of them have helped me at one time or another to feel more ‘normal’ and less isolated.  Online forums, organisations like Mind and SANE and projects like SANE’s Virtual Black Dog all comprise an online community for raising awareness, sharing experiences and providing support.  Certainly for me, support from people who have, or have had, similar experiences to mine means so much as I know it comes from a place of acceptance and understanding.  I am blessed to have a wonderful, close family who try very hard to understand and support me but, as I have written before, sharing too much with those closest to you is not only difficult, it can cause other, knock-on problems that affect your relationships and the dynamics within them.

Blogging is a good way of exploring my own feelings and experiences and to try and make sense of them.  Very often I have started to write a piece thinking it will go in one direction only to discover, as I write, that it veers off at a completely unexpected tangent.  This has occasionally resulted in me revealing perhaps more of my personal experience than I had originally intended, but it almost always helps me have a new insight into how events have impacted on my illness and emotions.  In a way, it’s like the more positive experiences I have had with therapy, in that the process itself can help me to see solutions for myself, rather than having them suggested for me.  I blog mostly for myself, exploring events in writing is a well-known way of coping with difficult situations and emotions, but also for others.  I have had so many positives from reading other people’s stories and from interacting with people online and I hope that reading my blog will make someone else feel that maybe, just maybe, they are not as alone as they thought.