Deciding to live is a very difficult thing. This seemingly easy thing to other people, who have not had these battles with themselves, may see this as a perplexing statement. But I’ve done it more times than I want to. Many people do, day in and day out. I know I’m not alone. Far from it.
It’s not easy living with mental distress that’s frequently in your life in one form or another – albeit in the background sometimes. Sometimes months or years go by where everything seems OK. Never knowing when or if it’s going to rear its head again. Sometimes it happens so insidiously that you hardly notice and sometimes it suddenly knocks you for six and sometimes life is AMAZING! Is this an episode or isn’t it? Am I too euphoric? Was I *really* hypomanic when I did that or was I just plain stupid and unsafe? Or was I just happy? Am I just a miserable person? Is this my character? Who am I?! Confidence diminishes. It’s sometimes a constant battle to keep strong, positive, hopeful, and draw on inner resources when they’re seriously depleted, just to stay alive…
I have everything to live for. The facts say this to me. Four amazing children – who I love beyond comprehension. The man I wanted to be with as a teen – that I reconnected with as a 33-year-old and had a beautiful daughter with (my fourth and last). A loving family. Friends I’ve known since forever, always there, and new ones gained along life’s journey. I’m in my last year of my mental health nursing degree and I’ve achieved marks for my modules and feedback from placement mentors and patients I’d never imagined, nor thought possible. I have a lovely home which, although I don’t own (lost my previous house to my ex), it is my home. Yes, I’m in debt – partly through necessity, partly due to previous misendeavours, and partly because I’m a student. But the debt doesn’t bother me. It’s manageable.
So what’s up? What is the point of all this?
I’m exhausted and spent. Tired of trying. Tired of being ‘strong.’ Tired of feeling I’m free only to realise I’m not, actually. Up, down, up, down. Tired, tired, tired.
Sure, things get better. Indeed, one could find lots of ‘adversities’ if they delve into the hidden depths of my past. They got better. They’ve made me stronger in general and who I am today. I’m not going to be a victim and I’m not going to be ‘woe is me’ here. I have a lot on my plate, I know that. I normally thrive on being busy and trying to live a full life. Why do I get ‘ill’? Lots of people without mental health problems have lots on their plates and don’t get ‘ill.’ There is only so much one can take though. Yes, they get better, it always gets better, but the ‘illness’ comes back again. Again and again and again.
My GP for my mental health has always been fantastic. She is my advocate. The one (and only) constant – in a professional setting.
I’ve got help in the past, and present. I’ve needed to fight for more help once entered into the mental health system and I’ve got it. Eventually. Though it waxes and wanes. But ‘help’ isn’t always help. Sometimes it’s misguided. Sometimes it’s plain shit. Sometimes it’s good. Sometimes it’s fantastic – usually that’s down to the individuals. You get good patches and bad patches and some downright terrifying patches. That’s the ‘system’ AND the ‘illness,’ by the way.
It’s very confusing and anxiety producing, being a patient. I don’t want to be a patient.
It’s very confusing being a patient in psychiatry. Add in psychology and hell, you’re kind of caught up in a confusing disagreement of what illness is and whether there are ‘mental illnesses’ at all. My own ‘diagnosis’ has changed over the years. Neurasthenia, panic attacks, generalised anxiety disorder, postnatal depression, adjustment disorder with depressive features, and now a type of bipolar called cyclothymia, apparently. This is common with types of bipolar – usually taking around ten years from first contact with professionals to diagnosis. This was 16. I’m told “labels are bad” and I’m told “diagnosis is good”. Opinions. The medical model. The Biopsychosocial Model. The Stress Vulnerability Model. Formulation. Lots of other models and words. Ignorance of agreed guidelines and evidence-based practice. We patients pick up on these disparities, though we may not be able to identify ‘what’ or articulate them – most especially during times of illness.
The professional disagreements. Is it our fault? Or isn’t it? We have to help ourselves. We have to manage stress. Cognitive Behavioural Therapy seems to be the answer to almost everything! But hey, guess what? You’ve got to be in the right headspace to implement everything you’ve learnt – whilst cognitively deficient. There are other therapies but these are often hard to access or have long waiting lists.
Then there’s the medications. Try this, try that. Side effects. Feeling lousy. Some work, some don’t. Finding the right one. It’s all individual but then that may stop working some day too. So you start all over again. We, the patients, often have a good inkling about what we need to do to help ourselves get better and I think very often we do try very hard to implement these things – more than is sometimes realised and sometimes more than patients are given credit for. But we do need help and support sometimes too, in the right way, at the right time. A reminder or refresher, or something different as we change and grow. It must be frustrating sometimes when things don’t work on us. I’ve got this dread at the moment of being diagnosed with emotionally unstable personality disorder. The symptoms (like many diagnoses) partly overlap with bipolar. Emotionally unstable personality disorder is a ‘team splitter.’ My dear friend recently died from this, having had a very tumultuous time and ultimately couldn’t be ‘helped.’ Yes, I’m angry about that and maybe that’s where my fear of that comes from.
I see different facets of the system, being a ‘patient’, a ‘carer,’ and now an almost ‘professional.’ I see enthusiastic, fabulous, dedicated nurses and staff trying their best in extremely challenging financial times. Services being cut (I won’t even get started on the ever decreasing amount of beds) and where there often isn’t enough staff to go round. They have to make difficult decisions about who stays on the books and who goes; whether people are ‘really’ safe or not, etc. Positive risk-taking. Doctors working ridiculous shifts, yet bearing the massive weight of responsibility for people’s lives through their decisions. Policies, research and best practice guidelines churned out of the government and organisations but very often not translating to what actually happens for the patients. The practice gap. Payment by results. Person-centred care.
I also see nurses who lack passion; some who I wonder whether they keep up with their lifelong learning, or perhaps joined nursing for the wrong reasons. I see unqualified staff making up the numbers for qualified staff (who, by the way, are very often amazing and have more time to actually spend with patients). I see burnt-out nurses.
Meanwhile, I see patients struggling.
Patients like me.
And one day I’m going to be too tired to fight. I almost am.
*NB – 10 days after this was written in 2014 I ended up in intensive care in a coma from an overdose. This led to a six-week acute psychiatric inpatient admission and final (current) diagnosis of bipolar type 1. I was suffering from a mixed bipolar episode. I’m pleased to say I’m now qualified.
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