Mental health: what support is needed?

I have been thinking for some time now about trying to get back into my writing. I seemed to have got a block of some sort and every time I tried to write I didn’t know what I wanted to say.

I guess the best thing would be to start off from my last post in December 2019… however, if you know me you’ll know I can’t remember what I had for breakfast. I remember there being something about a pandemic?

It’s been almost 7 years now since ‘No Secrets’ ceased as a charity and I thought that part of my life was over. But recently, from speaking to different people about mental health, my passion to help people is growing.
There were many reasons I decided to quit No Secrets. When I was preparing to be discharged from community mental health team, I felt it was an important time to focus on myself and my recovery. For 10 years the thought of being discharged and not having that ‘professional’ safety net was terrifying. Now that it had come, I felt like I needed to take a step back from the whole mental health setting completely.

The main reason was exhaustion. I was struggling to keep up with myself. I was working every day. We started with me and my mum, and a support group in St Helens. By the time we registered as a charity a few years later, we had set up support groups in Wigan, Warrington & Halton. We also did group sessions for inpatients in Leigh. We were rolling out training for professionals and those working in health and/or mental health settings. It grew way too big for me to manage. And whilst we had some extremely valuable support from everyone on the committee, it just got too much.

In the first couple of years, it was nice to have more time on my hands and it helped me to focus on my own recovery journey. But every now and then it would creep back into my mind and I’d still have that passion for helping people.

I have changed so much in the last 7 years; I think now it’s my time to start something. I want to share with others, how I got through my urges to self harm. How I moved on from being so dependant upon services. How I embraced the one thing that I feared so much. How I survived it.

But I have no idea what to do or how to do it. An online support group is an idea I’ve been mulling over. That way, it doesn’t have to stay local and could reach many more people across the country.

If you have any ideas about how we can rewrite the narratives of self harm please let me know. What is it that we are missing? What is it that people need?

Mental illness: Working with Borderline PD

Whilst I can share my own personal story of what it’s like to live with a diagnosis of borderline PD, I have also worked with a lot of people with the diagnosis; and I want to share my perspective as somebody on the ‘outside’.

I co-founded a voluntary organisation to help those affected by self-harm with my mum in 2007. Our main reason for this was to meet other people in the same position so we could support each other and know we weren’t alone. As the group grew and branched out to neighbouring boroughs, I took on the role of a bit of everything; group facilitator, manager & then chair and worked with people with a range of diagnoses. Many had been diagnosed with borderline pd, and it was these people who I really related to most. I could see the chaos in their world, I could see how they desperately wanted to change and make life better, and I also saw how they would stay ‘stuck’ in that vicious circle. As soon as things got too much for them they were self-harming without thinking about it; something I’ve spoken about within my own experiences of being impulsive. I wanted to change their lives, and felt determined to help. But let me tell you, it didn’t half drain me emotionally. Most likely because I wasn’t equipped to deal with my own stuff let alone anyone else’s. But I never gave up on them, on anyone really regardless of their diagnosis. I went to A&E with people who had overdosed, I went to the walk-in with people, I called numerous ambulances, called the police on several occasions when I was concerned about somebody’s welfare and spent hours upon hours on the phone referring people or chasing up referrals. The local mental health trust I worked with (which also happens to be the same trust that I’m under) were brilliant, eventually. I think most professionals were a bit wary of a group being started at first. There was probably a misunderstanding somewhere about what we actually did at the group (ie, was it an unhealthy group), and a lot of question about the safety of people who were a/ being supported and b/supporting others. In 8 years we haven’t lost any members to suicide. I don’t know if that tells you about the support we gave (and that people still give through this organisation) to members, or if that, the majority of times self-harm is about surviving the most difficult things we face rather than about trying to kill ourselves.

It’s nice to see that most of the people I’ve come across in this work are doing a lot better than they were; because of support from friends and/or family, mental health and community services, counsellors, GP’s; anyone really. Most importantly because of the person themselves being open to change, being willing to push themselves so far out of their comfort zone they can’t begin to imagine and being willing to try something different. I try to explain stopping self-harm as similar to stopping smoking, or drinking etc. You have to give yourself a good talking to, take a deep breath and just go for it with all you’ve got. You might relapse, you might not; whatever happens in the future you deal with as it happens. Focus on now, trust yourself and let other people help you.

Somebody very very close to me always says “if what you’re doing now isn’t working, you need to try something different”.

I couldn’t agree more.

The consequences of impulsivity

Yesterday, myself and some friends had a discussion about impulsive behaviour, and it made me see just how difficult it can be for people to understand those with borderline traits or PD. When I was more impulsive in a way that was damaging to me (taking overdoses, self-harming, spending too much money, wreckless behaviour etc.), I just didn’t seem to care about the consequenses of my actions. There were times when one minute I felt brilliant, and the next minute I felt dreadful and believed I wanted to die. My emotions would literally rocket from nowhere and I’d feel sudden, extreme and overwhelming emotions. Looking back on it, I realise it was because I bottled everything up. Then I’d get to a point where I was literally full inside from head to toe of emotions and feelings I didn’t like and they’d spill out. It felt so hard to control; in fact when this happened, I’d self-harm to release the emotions a little (this was where I was impulsive). I realise now though, that I did always have some element of control, because I could always hold it until I was alone. I never self-harmed in front of anyone else, and it was very rare for me to do it if somebody was in the house with me.

If you think about impulsivity being something you just ‘do’ without thinking about; we’ve all done it at times, and in positive ways too. It’s something that happens so fast, with me it happened so fast at times (or most of the time) that I didn’t realise what I was doing until I’d actually done it.

My emotions would go through the roof, lead to some kind of impulsive behaviour (usually self-damaging) and then as quick as they came on, once I’d acted impulsively, I felt OK again. I say OK, but what I really mean is I felt more in control of my emotions. I didn’t feel like I was going to ‘lose it’ when I was around other people. On the outside I could be with somebody and look like I was feeling fine, then 2 minutes after leaving them, I’ve hurt myself; that would mess with people’s minds. “Why didn’t you tell me you felt like that?” people would ask me. I never knew the answer, and would always reply with “I don’t know”. There have been times where I’ve took overdoses thinking that I wanted to die; when in fact, I just wanted somebody to help me, so desperately. I could never see that until now. I never wanted to die, but acting impulsively, I never thought of the consequences. I never actually thought beforehand that I could have accidentally killed myself. It would be half way through overdosing I’d think; “Shit what am I doing?”, panic and would ask someone for help or take myself to hospital. People question your motives and so many times I’ve heard “if you really wanted to die, you wouldn’t have come for help”. Well you know what, that’s actually very true, but to say that to somebody when they’re feeling so shit gives them the impression that you don’t give a damn. It’s invalidating. It’s not acknowledging the pain that person is in at that time, or was in at the time of harming themselves.

Impulsive behaviours have commonly already happened by the time I’ve known about them. I never ‘wanted’ to hurt myself, but I didn’t feel in control of it. I was stuck in a vicious circle of feeling bad, self-harming, feeling bad, self-harming. BPD has so many negative associations. I’ve often heard the words ‘manipulative’ and ‘attention-seeking’. Once again comes the spectrum; we can all be manipulative, and all are to some degree. The same goes for seeking ‘attention’; we all have done or do this, to varying degrees, using different behaviours. Perhaps using the word ‘attention’ isn’t very accurate, or is a little bit of a broad term. If you look closer, there is a need in that person that is not being met, and they don’t know how to ask for somebody to meet that need. It could be approval-seeking, seeking reassurance from others, seeking emotional support, seeking comfort, seeking company – there are a million and one things it could be. One thing is for sure, whenever I did things that others saw as attention-seeking (self-harmed) I saw as my way of releasing my inner pain. For me, and for most who self-harm, it was very private and the only people who ever saw my fresh wounds were medical staff (GP, walk-in centre nurses, A&E staff). The only times those people might have seen a wound, was if I’d gone too far and needed stitches, or if I had an infected wound. Probably 90% of the times I’ve harmed myself, I’ve dealt with it alone and not need to tell anyone about it. So really, if I was attention-seeking, I was doing it so wrong!

People who regularly behave in a way that’s harmful to themselves are actually struggling emotionally. But, because of the way(s) they handle their emotions, they can be viewed in a very negative light; manipulative and attention-seeker. Those are harsh words to use for anyone, let alone somebody who is in turmoil and doesn’t know how to ask for help.

I really don’t know if I’m making any sense so I’m sorry if I’v rambled on a little!

I graduated from therapy

Well, strictly speaking, I’ve got 1 last 1-2-1 session next week, but I had my last group session today and although it was hard knowing I won’t be going back into that kind of supportive environment, it was exciting too. The prospect of a lie-in on a Thursday got the better of me!

In all seriousness this is a huge deal for me. I never thought I’d be able to say that I’ve reached the end of therapy, after 9 full years in services, and feel excited about it. If you read my post about attachments, you’ll hopefully understand a little more about how strong my attachments were with mental health professionals (in particular) who were working closely with me. To finally completely let go of those safe attachments, and that safety harness, is the scariest thing to think of, and admit to. For some strange reason, up until recently, I found it so difficult to just tell it how it is. It just wouldn’t happen for me, until I’d started to develop personally, in my recovery. I was talking to my CPN in my 1-2-1 about 3-4 months ago. I said something (but have no idea what it was) and I realised at that moment that there was a change in me. Literally, out of nowhere, came reels and reels of complete honesty about my life. I admitted to things I’d never even be able to admit to myself, and from that point I felt completely amazing. It is so hard to describe what happened that day, in that 50 minutes, because it’s something that’s never happened to me before. Nothing has ever made me feel as good as I did, and have, from that day. Simply because I stopped pushing the true thoughts/feelings away, and I said them out loud which acknowledged them for the first time, comfirming they were in fact very real. I explained my attachment issues with professionals and admitted that I was terrified of being discharged; instead of persistently repeating “I’m not worried about being discharged at all” (whilst secretly shitting my pants). I admitted that, for some reason, I found it hard to give the professionals all the information they needed, in order to be able to support me better. Instead, I would drip-feed them information, try and hold it all together, until a ‘crisis’ would occur which would usually end up in a hospital admission. I was aware at the time that I drip-fed, and I couldn’t help it. It was my way of keeping myself safe I suppose, and I think now that it’s something we all do to a degree. Not a lot of people go around being 100% honest every second of every day about how they were feeling, we have┬áto build up trust with people and learn when it’s ‘safe’ and appropriate to express our thoughts/feelings. It just takes different amounts of time for others to start trusting people, and I guess the more you’ve been let down by people in the past, the longer it’s going to take you to build up that┬átrust with somebody in the future. It’s a really ‘simple’ psychological defence mechanism that keeps us safe from other people.

While it may take somebody a long time to trust if they’ve been hurt previously, it can sometimes be the opposite too. For me, I’d sit there wanting to honestly answer their questions, (are you having urges to self-harm? Are you safe? Are you feeling suicidal?) and the real answer would come into my head, but they heard the complete opposite to whatever that was. The answers to those questions at that time, by the way, would have been no, yes & no; but the real truth at that time would have been yes, no, yes. Is that confusing to you? I’m chuckling now at the thought of you going to and from the questions to match the answers. To sum up where I’m at now, if I was having urges to self-harm, wasn’t safe and felt suicidal, and I was asked those questions, I wouldn’t lie. I’d be able to express my true feelings in a way where other people could understand them better. Rather than, saying I was fine and then an hour later taking an overdose or hurting myself in some way. It really sounds so simple to me now, but you know what, when you’re in that ‘place’ you feel completely and utterly paralysed by your emotions.

Tolerating the intolerable feelings; what is the worst that could happen?

Tolerating feelings and emotions is something I’m still trying to get to grips with. This is a mammoth task for anyone at times, but is something people with borderline PD often struggle with. The inability to tolerate certain powerful and overwhelming emotions can cause a number of problems, such as anger management issues, self-harm (as it can alleviate overpowering emotions) and impulsive behaviours (sometimes behaviours that can put people at risk) such as wreckless driving, binge eating, over-spending, promiscuity. The reason behind these problems usually stems from a persons inability or unwillingness to tolerate how they feel. The behaviour usually leads to a dramatic change or shift in their feelings. Some of the feelings that can come from these unhelpful behaviours could be numbness, feeling free, feeling more in control or a feeling that you deserve to suffer (these are just a few examples and everyone is different).

For me, I avoided sitting with those overwhelming emotions usually by self-harming. Self-harm was the only way I knew how to change or reduce the intensity of my feelings.

For example, if I felt angry it was usually very intense and I had a strong feeling that I would completely lose control of myself. So once I’d harmed myself, the intensity of the anger reduced (like it was releasing my emotions) and I then felt in control again. This was a vicious circle I was stuck in, and it was only when I started trying to tolerate those emotions that things started to change: i broke that cycle. I remember lying in bed one night feeling extremely angry over something. I was so angry I wanted to punch something or scream and shout. Then came the self-harm urges, but I talked myself through it. If I lay there and kept myself as still and calm as possible I could focus on reminding myself that feelings come and go. That the way I felt at that moment would not last forever. And even though I felt like my whole body was about to explode, I could reassure myself that it was just a feeling and it could not harm me. Eventually I must have calmed down, because I fell asleep. Of course when I woke up, those intense feelings had subsided and the situation felt less overwhelming. Don’t get me wrong, it’s a really difficult thing to do, to sit with these horrible emotions and not act on them, but they do pass off eventually.

During times where your emotions are overwhelmingly strong, try to tolerate them, and ask yourself ‘what’s the worst that could happen right now’ – most of your answers may be irrational fears (ie when I felt I was going to explode it was important to reassure myself that this was a feeling that couldn’t harm me and my body was not going to explode).

The truth is, you have to be prepared to try new things and to push yourself out of your comfort zone. Nobody likes that, but if you don’t challenge your thoughts/feelings/behaviours they won’t change or improve. You also won’t learn about your strength, but we can all be very strong when we need to be. We, as humans, tend to push through things and move forward. But the only way you can start to move forward is by clearing your path of any barriers or by finding or creating a new/different path for yourself.

Give it a go. What’s the worst that could happen?

The unexpected welcome post

Well this really is going to be fun… a blog full of the randomness of my mind; the stuff you shouldn’t say out loud. It won’t all be like that though. I’m just going to talk randomly about whatever pops into my head, so if I’m honest the topic could be absolutely anything.

For those who know me, you’ll know I’ve done a lot of work around mental health and self-harm in particular. Next month it’ll be 9 years exactly that I first came into contact with mental health health services. As it so happens, next month will also be the first time in 9 years that I’ve ever been discharged and completely out of secondary mental health services.

In 2013 my CPN (community psychiatric nurse) went on maternity leave. The team gave me my options: to try a 12 month programme specifically for people with a diagnosis of Borderline Personality Disorder, or be discharged from services. At that time I was absolutely distraught just to hear the dreaded “D” word. How could they even consider discharging me when I felt so low?

Living with a personality disorder is a very scary, lonely and confusing thing. Having first been diagnosed years ago, I refused to believe that my diagnosis was correct. However, if it meant I had to do group work and 1-2-1 work every week rather than being discharged, I would. At that moment I would have agreed to anything to avoid discharge because I was so terrified of not having that support to fall back on. Now as I see it, I was afraid of being abandoned and rejected. I was afraid that people would no longer care about me. My needs were somehow being met by the professionals who worked with me, and for as long as I had a professional to work with, I felt somebody cared. I felt I always had at least 1 person to turn to in times of crisis.

Anyhow, I agreed to do this 12 month programme that the team were piloting. It took about 12 months for them to set it all up and prepare people for the group work. During this time I had regular 1-2-1 sessions with a new CPN. She, and others in the team had been trained in Structured Clinical Management (SCM) which is what the 12 month programme was based around. I was dreading doing the group work, but the group was only small and we all got on. I have 2 group sessions left and I will have completed it.

I have to say, at the beginning I was only going along with it to stop them discharging me. I am so glad I did agree to it. Every week we’d discuss different things, learn new skills and then be given optional homework to practice what we’d learned. I gave things a try, I liked the theory of things and remember saying “in theory it sounds brill, but doing it is a completely different thing”. I started with little things, practicing talking more openly with loved ones, being honest with people about how their behaviour sometimes affected me, and moved on to start being more assertive. First I started saying no to things I really didn’t want to do. I was riddled with guilt every time I did it, but I had to tolerate it. I had to mentally remind myself that I had the right to refuse to do something I didn’t want to do, that if other people were unhappy with it that was their problem, not mine. And to my surprise, it became apparent quite quickly that this shit was working. People seemed to stop relying so heavily on me for things and stopped assuming that I would agree to do something they asked of me. Behaving in this way eventually led me to start believing that I was as worthy as anyone else of asserting myself and my own needs. The skills they taught us in group helped me to assert myself in a way that wasn’t offensive to others. I learned to be honest with people. I learned to sit people down and tell them if something they had said/done had upset me. That way, I stopped bottling every little annoyance up, and my overwhelming feelings slowly started to reduce. I became more aware of my emotions; how to name what I was feeling and what to do to change it if I needed to, or how to tolerate certain feelings until they passed.

I feel a little like I’m waffling. I didn’t want my first post to be so long and babbly but you know me, I get on one and can’t stop myself.

I’ll carry on with this in my second entry. So, if you wanna know what’s so different for me now, how I’ve managed with my self-harm and how I feel about the looming discharge then keep checking back for post 2!