Mental health awareness

If you hadn't already noticed, this week is mental health awareness week. Glossy TV ads tell us we shouldn't be ashamed of having a mental health problem, that we should 'speak to someone.' We are told we are 'not alone' and that 'one in four people suffer from mental illness.' 

Well, you know what? We have probably never been more aware of mental health issues, thanks all the same. Those of us who are struggling don’t need to have our awareness raised. In my view, the problem is not lack of awareness, but a lack of suitable and appropriate support. 

Why is it, at a time when we have never been more 'aware' of mental health, that the conversation never seems to move beyond depression and anxiety? I'm not belittling these things at all, they're awful, they blight people's lives and they are rightly getting much needed attention. But what about those of us with other issues? 

You see, when we are told to 'talk to someone,' this assumes that the person who is listening knows what to do with what they've been told. In my experience, this isn't the case at all. My experiences of voice hearing combined with persecutory delusions are simply not palatable to most people. I've got to be honest, most people are freaked out and don't know what to say. For example, I told my husband the other night that my voices were instructing me to set myself on fire because I'm such a terrible person. I mean, what do you say to someone who's just told you that? Fortunately James has plenty of experience of helping me when I'm unwell, so he wasn't too perturbed. 

Most people, however well-intentioned they may be, feel out of their depth when we share our experiences. All this exhorting us to talk, telling us we are not alone and so on feels rather hollow. There's still huge stigma around 'severe and enduring' mental health problems, for example a lot of people still believe that people with psychosis are unpredictable and menacing. (I promise you I'm not!)

Living with schizoaffective disorder isn't easy. The medication I take dials down my symptoms, but it doesn't eradicate them altogether. I still hear voices, still feel paranoid at times and still believe that people can read my thoughts, put thoughts into my head or remove them. Finding a balance between 'reality' and what my brain tells me can be really difficult. Sometimes it'd be useful to reality check my more bizarre thoughts, but I daren't risk sharing them for fear of being seen as a lunatic. 

Awareness campaigns are not in themselves a bad thing; my complaint is really that they don't go far enough. Presently, the conversation starts and ends with the more 'relatable' conditions. There needs to be far greater awareness of less common mental health issues, combined with appropriate support for those who need it. 

More importantly (and this could be the subject of a blog post of its own), we need to challenge our toxic environment, which encourages us to feel unbalanced, distressed and creates a fertile ground for mental health issues to develop. 

Promoting independence

One of my friends has had an awful experience today with mental health services. She's been discharged after just six weeks and told that despite her ongoing psychotic condition, she can manage on her own, with support from her GP when needed. This seems to be the case in many areas now, with mental health services keen to discharge people under the guise of 'promoting independence' (I'd laugh but it really isn't funny). People are being discharged from services well before they are ready and if they resist, they risk being labelled 'dependent.'

Discharge as 'promoting independence' though, I mean bloody hell, talk about doublespeak! The independence and resilience agenda is potentially so very damaging, I've seen it coming for quite some time and am extremely sceptical about the current buzz word 'resilience.' The word has been so bastardised and stripped of its original meaning that it has begun to mean 'to behave as though life events have no impact.'

All too often, resilience then becomes a stick with which to beat people who are struggling. Depressed? Anxious? You just aren't sufficiently resilient! It’s also used to place blame onto people who are struggling to work under oppressive institutions and practices. The official response to burnout becomes 'this person lacks resilience,' not that they are being expected to work in impossible conditions, meeting impossible demands.

Makes me mad, this stuff. In one sense I long to be free of mental health services because they really do push some crap in our direction. On the other hand, I've (mostly) received good quality care, particularly from my care coordinators and I know that once I've been discharged (perhaps I'll be said to have 'achieved independence?') It will be incredibly difficult to access services again, should I ever need to.

You see, there's another serious problem within mental health services. In my area, to access secondary care, you must seemingly present with psychosis, but not be deemed to have 'complex needs.'  Which means that legions of people with serious (in some cases, life-threatening) mental health problems are left with the lottery of receiving care from primary care, i.e. their GP. My personal experience of GPs has been extremely variable, some have been fantastic when it comes to mental health and others dreadful. In any case, you only ever get a ten minute appointment with even the best GP and the repertoire of help and support they can offer is incredibly narrow. You might get a short course of CBT if you're lucky. Your GP could refer you to secondary services, but if that referral is turned down, you're on your own. This leaves many people without access to specialist mental health support. It's all well and good to tell people 'it's good to talk' and 'It's ok not to be ok,' but if we do reach out, who's listening and what practical support is available?

I'm told that even people within secondary mental health services are being told to 'call the Samaritans' if they are distressed. Let's get this right; people who are acknowledged to be very unwell are being told to contact a voluntary organisation, rather than ask for help from their existing mental health team. I believe this has even been said to people who are in hospital. No disrespect to the Samaritans, I think they do an amazing job; my point is that people are being turned away by their own mental health teams and asked instead to speak to a stranger on the phone.

We are told that more money than ever is being spent on mental health in a bid to achieve parity with physical health. If this is the case, then why are mental health teams becoming increasingly selective about the people they will work with? Why are we being asked to call Samaritans? And why are people still being sent hundreds of miles for a hospital bed? (I was very lucky, I was sent just 25 miles away). I don't have the answers, I just wonder.

I don't know if there's any mileage in treating mental health simply as 'health,' with the body and the mind being interconnected, two parts of the same person. I'm not sure I understand the artificial distinction between mental and physical health. Something for me to learn more about.

Meanwhile, my friend has been left to make her own way in the world. Luckily she has a supportive family who live close by and friends who are mental health savvy, for further support. Many others are less fortunate. Is 'dependence' on services really such a terrible thing?

A to Z?

I thought I was doing pretty well, recovery wise. Actually, I take that back, I WAS doing well with my recovery. And then...

I started feeling as though someone was following me. There was a dark shadow at my shoulder, which disappeared whenever I turned around. Then the voices started. Sometimes a mundane kind of commentary, "she's making a cup of tea," sometimes hostile "fat bitch, you need to lose some weight." Or worse.

I started seeing the world through a kaleidoscope of colour. Shifting shapes before my eyes, changing shade rapidly. Then I noticed a smell. A bad smell, rotting, like bins left out in the hot sun. It followed me around, so I reasoned I myself must be the source of the smell. I started bathing and showering multiple times during the day, changing my clothes. Nothing would shift the stench. I had butterflies in my stomach almost permanently. I began to believe I was host to a colony of parasitic worms and that I was rotting from the inside. I could feel them shifting around under the skin of my abdomen -  that was the source of the butterflies in my stomach. I borrowed my husband's electric drill and told him I was going to drill a hole in my stomach to get the worms out. Luckily for me, he relieved me of the drill, put it in the shed and hid the key. I was quickly taken on  by the home treatment team.

I began to believe that if I took all my medication at once, I'd be well again. I had quite a stash - anti psychotics, anti depressants, mood stabilisers, diazepam and zopiclone. A cocktail of almost- certain demise if taken all at once. I casually mentioned my plan to the CPN from the home treatment team. I had no reservations about sharing my plan because I thought it the most logical solution in the world. He made arrangements for my medication to be dispensed daily, so I didn't have so many meds at my disposal.

The psychiatrist changed the dose of my anti psychotic and recommended I continue to be seen by the home treatment team. And that's where I am right now, battling with the interface between reality and unreality and trying to challenge unusual beliefs with logic and 'common sense.'

I realise that recovery isn't a linear process, A to Z in simple steps. The way I see this is I've wandered down a blind alley by mistake and have to work out how to get out of it. A diversion, if you like. I'm really looking forward to getting back onto the road.

Post Christmas blues

It's been a while since I updated my blog and I thought it was about time I wrote something.

Things haven't been good for me recently. On the positive side, I enjoyed a family holiday to Cumbria over Christmas. On the negative, it was whilst I was away that my mental health collapsed again. I'm attending day hospital at the moment because I'm not well enough to be alone at home. It's more manageable than being a psychiatric inpatient but it's still pretty intense and has caused some disruption to family life and our usual routine. We're coping with help from family, mainly in relation to the boys. I'm grateful to them for stepping in, even though I feel guilty that I'm not well enough to do much parenting.

Life isn't much fun for me at the moment but I'm hoping things will improve as we head towards the spring. Going back to work is a long way off, both in terms of time (I'm not due back until September) but also in relation to how well I am. I'm looking forward to being well enough to think again though.

It's a funny thing, mental health. When you're in a good place with it, you sort of take it for granted and expect it to continue serving you well. When you're in a bad place with it, you'd give anything to feel as 'good' as you felt on your bad days when you were well!

I'm feeling optimistic today. Being at hospital is definitely helping. The nurses are lovely and I'm impressed by the way the mental health team have put together a package of support for me. They phone me when I'm at home to check that I'm ok and coping. I think I'll be there another fortnight or so, then discharged to the community team. I haven't been around much on social media so I'll take this opportunity to wish you all a happy new year! Xxxxx

Another research plug

http://www.volition.org.uk/audible-thoughts-research-project-mental-health/

Research website

If you are 18+ with lived experience of the NHS mental health system, please consider taking part in my research. Further details and instructions about taking part can be found here
audiblethoughts.org.uk