Monday, 19 July 2021

EVERYTHING THEY DON’T TELL YOU ABOUT RECOVERY | MARKING NINE YEARS SINCE BEING SECTIONED & ADMITTED FOR 2.5 YEARS!!!

‘Recovery isn’t linear’ is a very common saying these days in the mental health industry. I think this is because campaigners are making way in breaking the stigma and discrimination around mental health; and this has meant more people are finding the confidence and bravery to speak up about mental health. In doing this, it has enabled everyone to learn from their peers. So, to mark this date which – nine years ago – I was sectioned and admitted to a psychiatric hospital over 100 miles away from home for two and a half years (the photos are from that admission); I wanted to write a post that might help others to learn from my experiences of things which I was never advised on or even made aware of their existence…

It’s ok if you can’t find the point in showing your scars in public.

I remember walking through the streets of a nearby city and seeing two girls and immediately I noticed that one of them had self-harm scars (and I know some people might think ‘you can’t assume that’s what they were’ but those people didn’t see these scars!) on her arms. 

Firstly, it made me kind of sad. Mostly because it was the first thing about her which I noticed. And this is one huge reason why I very rarely have my self-harm scars showing in public – I worry that I’ll almost become defined by them. That someone else might look to me and instead of seeing my bright red hair (I mean, I doubt anyone could miss that!), their stares would be drawn to my scars. And honestly? I’d so much rather be known as the girl with red hair than the girl who has self-harmed.

I’m very aware that in blogging about mental health for over eight years now, and that I’m more than willing to be labelled a ‘Blogger’ there might be some element in there when I’m being defined by mental illness. The thing is, I have control over that. I can control how my self-harm is referred to. I mean, people can misinterpret, but ultimately, I can say that I’ve done it for this reason whereas if I were to show my scars in public with absolutely no context to them…? God knows what people would think or come up with as to reasons why I’d done it.

The thought of caring what others think so much is something which came up in the situation with this girl. You could only see her scars because her sleeves were rolled up and I’m thinking she only did that because she was hot because it was a really sunny day. So I was thinking that she should be able to cool her body without being labelled or having assumptions made of her.

The controversial side of this though, is that should people who have self-harmed and go on to show their scars, be entitled to complain about being judged by strangers? I mean, we all know that there’s a whole host of people (including professionals) out there who would say that you should take responsibility for what you’ve done and therefore, you shouldn’t diss others for judging you for it. It’s kind of like a ‘you-asked-for-it’ attitude. The irony is, all those people saying someone who self-harms should take responsibility, are basically saying you need to own how you cope or respond with something. And if that person goes on to make judgements and assumptions in response to the scars, surely that’s then their responsibility? I’ve definitely learnt over the years that it can be wrong to say ‘I’m only doing this because of the situation you’ve put me in.’

Another reason for my sadness around seeing this girl’s self-harm scars, was the pure thought that I have self-harm scars too. And that I’ve lived a life where I can recognise such scars on someone else and can almost instantly empathise with a complete stranger! Like, I can imagine the pain, sadness, and overwhelming anger she has likely felt in her own life. And this is one reason why I can’t imagine fully working in mental health (as a Support Worker etc.) because I don’t know how I would feel about the sadness of speaking with so many different people and hearing they’ve all felt a way which I can relate to. 

No matter how stable you are, you might still need medication.

A classic manoeuvre with those who are on psychiatric medication – particularly anti-depressants – is that when they begin feeling better, they stop taking it. They often don’t realise that the medication is likely a hugely contributing factor to their stability.

For me, I think I’ve done this maybe once or twice. The majority of the terrible decisions around my medication has been largely down to the professionals attempting to see how low the doses can be and me still be safe and stable. It’s usually something where I just think ‘why even risk it?!’ Like, if you’ve got a service user who used to self-harm, hallucinate, and who has attempted suicide, and is completely hallucination free and isn’t self-harming, why would you take a chance in reducing their medication? And I think the reason this angers me is that in taking the risk, it isn’t the Psychiatrist or GP who is at risk of suffering from the decision. It’s the person they’re doing it to.

The biggest medication drama I’ve ever had was when my pharmacy stopped requesting my anti-psychotic medication which controlled the hallucinations. It was a total error on their part, but – once again – it was me who paid the price for it. Almost inevitable – and definitely understandably – the hallucinations came back and in a few psychotic episodes, I self-harmed so significantly that I needed surgery twice to mend the branches of the Radial Nerve I had severed. On the third occasion, the surgeon made the decision not to operate because they worried, I would just go on to ruin their work. So, I now have permanent nerve damage. Yet the only punishment the pharmacy had was the worry of being sued! Oh! And they promised to use it as a ‘learning curve’ in retraining their staff!

When I was put back on the medication, it got to the right dose (they had to gradually increase it) and had taken a few weeks to build back up in my system, I’ve literally had no hallucinations since. And without the hallucinations, I have had no reason to self-harm so that has stopped too. The thing is, what were the chances of that being able to happen though? I mean, the A&E staff said a few times that I had I self-harmed a few millimetres to the side, I would have cut the artery and bled to death. There was also a few times where I felt so completely overwhelmed by the hallucinations that I contemplated suicide in a bid to escape. What would the pharmacy have done then?!

Through that experience, I – and the professionals – have really learnt that my antipsychotic medication is one which I really need and since then, there has never been another discussion or debate about it. However, with me almost being one year free of the hallucinations and self-harm, I’m beginning to consider the prospect of reducing the other psychiatric medications (I’m on two anti-depressants, a mood stabilizer, and the anti-psychotic). 

Part of my eagerness to reduce my medication is around this almost natural thought and feeling that if I’m really stable and if I’m really in recovery, then why should I need medication to stay that way? However, having seen the damage that can be caused without my medication, I’m almost terrified at the idea of coming off it – or even just reducing it! I mean, do I really want to take the risk of losing all this stability and happiness purely because there’s this expectation that I shouldn’t even need medication anymore? Is it really so embarrassing and shameful to say that I still rely on medication?

And that – the reliance – is a huge concern amongst professionals because mostly, they don’t want service users to consider their medication as their only coping mechanism or strategy. It’s so important that we – service users – are equipped with so many more ‘tools’ to help us cope safely with everything life throws at us.

You might find yourself debating more therapy.

So, my discharge from my local Community Mental Health Team (CMHT) was with the agreement that once I’d been safe for at least six months, I would consider referring myself for complex trauma therapy. The whole six-month rule was the advice of the therapists with the rationale that if I had been stable for a significant amount of time, then that would mean I’d be better positioned in coping safely with any difficulties the therapy might bring up.

Initially and for a little while, I agreed and was sort of unphased by the idea of going through therapy because I hadn’t really had the chance to see how happy and content I could be with life now that I was discharged. Which meant that as time has gone by, I’ve become more and more reluctant to contact the therapy team. Now that I’ve experienced a life of stability and safety for almost a year, I’m hesitant to do anything which might unravel this. Which might de-stabilise and destroy all my hard work.

I definitely can still see the professionals point that perhaps things won’t really be ‘over’ until I’ve done the complex trauma therapy, but I feel better able to manage a sense of things still being there; than I would be to manage all the things therapy might bring to light. And in making the decision to begin therapy, if anything ‘went wrong’ with it, it’d be completely my fault. My responsibility. I’d have no one to blame but myself; and from experience, I know that being angry and blaming myself, is a very difficult and unsafe position for me to be in. 

So, I had all this confusion and uncertainty around therapy until my lop-eared, Lionhead bunny Pixie died a few months ago (you can read more about her death here). I called my GP to request some Diazepam to help with my upset over the loss and to help me through consoling my very distressed calico cat; Emmy, who had been best friends with Pixie. He ended up saying that he would rather I confront what had happened and actually talk about it to someone rather than cover the thoughts and emotions with a blanket of sedatives. Doing that, would give great possibility to the chance of me either struggling to stop taking the medication, or struggling when I’d finished the medication. In my mind, I just wanted a bit of intensive help to get me through the first few very intense and upsetting days, but I became very grateful to the GP’s decision.

Him saying I should talk about it, kind of illustrated that he had faith in my capabilities to come through the loss myself and without medication. He believed in my strength and my courage even when I believed I had very little of either! And having someone believe in you when you don’t believe in yourself, can be a very powerful tool to aiding you in coping with something difficult. In the past, I probably would’ve had the attitude that I would prove him wrong and show him that I needed the medication but now that I’m in recovery; instead, it ignited wanting to prove myself worthy of his confidence in me. It was like I wanted to prove that I deserved it and that I could make him proud!

So, I made the phone call and referred myself for therapy and in the time, it is taking for me being on the waiting list, I have really grown and developed a healthy and safe attitude to losing Pixie. I can now see it with the view that at least she is out of pain and that at least I still have Emmy. And finding those ‘positives’ to focus on, has meant that I’m so much more stable and motivated to come through the grief safely.

Your views on your local mental health services and professionals might change.

I’m kind of ashamed to say that in the first few years of my mental illness, my local mental health services, the nearby A&E staff, and my local Police force became enemies to me. I had little to no respect for any of them – even the ones who hadn’t individually upset me! I held no appreciation or compassion for them and the time and effort they put into their work of caring for others.

The thing is, I had so many terrible experiences with the various professionals who became involved in my mental health care – particularly in a crisis – and with my levels of anger around the abuse already overwhelming me, those instances often sent me ‘over the edge.’ I mean, these people would know I was already struggling, yet they’d say things, do things, make decisions which would worsen my mental health and still, I was expected not to hold this against them?! 

However, I think that in recovering and going through Dialectical Behaviour Therapy (DBT) I’ve learnt a lot about responsibility, appreciating and considering others, and the importance of recognizing the efforts, passion, and dedication of others. In doing this, I’ve come to find that my views on the Police, A&E staff, and my local mental health NHS services have drastically changed and I now have the upmost respect and appreciation for all of them!

In having this better relationship and mindset with the professionals, I’ve been able to experience many different opportunities in collaborating with them and their different organisations. The collaborations have been motivated by my final realisation that these people and those organisations and services have literally saved my life – even when I didn’t want it to be saved. So now that I’m grateful to be alive, I feel like I need to prove myself thankful and appreciative in whatever way possible.

The one difficulty in my attitude changing and me finding more respect and appreciation for these organisations and professionals, has been that since I have continued to be in the mental health world – mostly through social media but also through events – it meant I’ve come across a lot of people who hold my previous opinions and feelings toward these particular organisations and their staff. And this brings a lot of challenging thoughts for me…

I mean, I can very obviously totally relate to those who are having these difficult experiences, but then this makes me sad – the thought that there are other people going through those similar situations. And that means I’m nervous to promote my local NHS and Police force because I worry that my supporting them would initiate arguments with all the people who wouldn’t agree with that positive opinion. I’m concerned that those people would feel that their experiences were being dismissed or belittled in some way by my focusing on the benefits of these services. But they’d be wrong there – I have a huge belief in the attitude that credit where credit’s due. People – services and professionals – should be held accountable for their actions and this should be regardless as to whether that is negative or positive. There should be no inequality in promoting a service and in criticising it.

You might feel like you will never get a fresh start.

Since being discharged, and even in the almost (331 days) past year of my safety and stability, I’ve still had numerous admissions to my local medical hospitals for various reasons. Recently, I have realised that no matter how stable and safe I am, my medical records won’t change. I mean, obviously they’ll illustrate how long it has been since I was last admitted, but my past – my history – will always be there.

It’s not difficult to find images of quotes on Pinterest or posted on social media saying something along the lines of ‘every morning is a new start’ or ‘tomorrow’s a clean slate.’ But those images don’t say anything about mental illness or trauma and how persistent either – or both – can feel. How no matter how many mornings you have; it won’t change what you have done or what has been done to you. Those things won’t just magically go away because the date has changed!

Initially, when I realised this in my recovery, I felt so disappointed and my almost natural – or at least immediate – thought was ‘what was the point?’ Like, why did I put in all that time and effort in sitting through numerous DBT sessions if myself and everyone else wouldn’t forget the person I once was, the things I have done, and the decisions I have made? And this has been a huge motivation for me to have persistently looked into moving to a different area of the country. I mean, I recognise that my medical records would follow me, but all those people who wouldn’t let me forget my past, wouldn’t be there!

Eventually though, I have come to realise that it is so much easier to embrace my past and to adopt the attitude that yes, I said and did those things, but I’m no longer that person. And I no longer feel as though I need to prove that face to others. I mean, if you spend your life trying to influence the opinions others hold against you? Well, I believe, it’d be a complete waste of time. Those people will think what they want to think, and what’s most important is that I know who I am. And that I love and accept that.

It’s ok if talking about your experiences feels like a choice.

I thought this was an important one because I’ve seen a few mental health service users post on social media that they feel some sort of pressure to use their journey and their story to help others. They feel as though there’s this message across so many mental health campaigns and from mental health advocates that their journey wouldn’t be important or worthwhile if they didn’t utilise it to help others in some way. This shouldn’t be true.

But being reluctant to share your experiences can happen for a number of reasons. I mean, there’s been a lot of instances whilst my mental health was poorly where I’m honestly ashamed to say they have happened. A huge part of that anxiety is the thought that if even I, really struggle to recognise it’s something I did, how could I possibly expect complete strangers to be sympathetic and understanding?

Another reason for hesitation in sharing your story is something which I’ve also struggled with – particularly recently – and it’s about the worry and concern that if you were to talk openly and honestly, would your mental illness become a defining factor of you? Would people be able to look at you and see you – and not your diagnosis?

The argument as to whether diagnoses are helpful is a tired but important one because it really recognises that for a lot of people, their diagnosis has been detrimental in some ways. Sometimes people feel as though they now have a ‘label’ and that having this means people wouldn’t look beyond it.

This has led me to recognise how fortunate I am that my diagnosis ended up being really helpful and pretty much essential to my recovery. I mean, initially I was told that Borderline Personality Disorder (BPD) is a ‘death sentence’ because ‘no one knows how to treat it and people just end up committing suicide anyway.’ However, finally having that diagnosis not only meant I felt less alone because there were others with it, it also meant I could finally have access to the specialist services. And yes, those services didn’t exist in my locality (they do now!) and I had to be hospitalised over 100 miles away from home, but without that diagnosis I would’ve continued to be ‘supported’ by so many professionals who had no real knowledge or understanding of the fact that someone with BPD really needs specialist help in order for it to be effective. So, in talking about my story, I try to promote the idea of diagnoses and reassure others with BPD that it could be a useful, positive tool to your chance of accessing psychiatric services.

You might feel like your illness has been a waste of time.

So, this last part has really linked to the previous bit about sharing your story because, to be honest, the thought that my mental health journey could help others, has been a huge motivation in me speaking so honestly and openly for the world to read! And that hope that I do help others, has really helped me with my feelings that my mental illness has been a complete waste of my life!

I think that it’s generally very easy at my age (30) to look to friends and find yourself feeling completely inadequate and as though you’re ‘behind’ in terms of achievements and current relationship status, housing situation, career position, and numbers of children (if any!). But to look at the lives of others and know full well that you’re only feeling ‘behind’ because your mental illness has literally stopped you from doing all the things your friends have had the opportunity to do; can be a fair bit more than disappointing – it can be a little bit heart-breaking too.

To come through this frequently troubling thought, I’ve come to look at all those years of me being poorly and in and out of hospitals instead of buying a home, having a baby, getting married, having a promotion etc. are an excuse to make up for lost time! Those years are a motivation for me to take every single opportunity that comes my way – to never say ‘no,’ and to live life to its absolute fullest!