Open Letter To MH Professionals, From Someone Lost In The System.

Professionals

*This is in no way an attack on MH services, as I’m sure you all feel the same. It’s an expression of helplessness, and a plea to the powers that be, for something to be done, not just for me but for millions of people in this country, denied the support they need*

 

Dear mental health professionals….

I know you’re under pressure. I know you’re underfunded. I know you have rules and tick boxes that prevent you from doing the job to the standard you wish you could. You work hard and do the best you can, and I have a lot of respect and appreciation for the majority of you, who have chosen a career based on helping ease the suffering of others. It’s admirable. But can I just share with you my experience of being on the other side? Because whilst you may have the option of walking away from your job if it ever gets too much, I cannot walk away from my mental illness. So I’d like to share with you the struggle of existing in this world with this illness, and nowhere to turn for support……

Nine years ago I was doing a couple of courses of DBT. Little did I know at the time I was actually being treated for Borderline Personality Disorder. I hadn’t heard of this before, and was offended at the suggestion that I had this – especially as I had not been told I had it. I thought it meant there was something wrong with my personality… it felt like an insult. I now know that not to be the case at all! A couple of years later during individual therapy sessions I would be given the opportunity to see a psychiatrist, and get the official diagnosis… but it was suggested to me that it may not be a good thing to have this label, due to the stigma around it. I worried it might affect my chances of working. So I decided not to.

I left the care of CMHT and had to try and cope on my own. I’ve had a good five years surviving on my own as best I could, and coming to terms with the fact I do have BPD. But the last couple of years have been the worst I’ve experienced and my mental health has deteriorated. And now I find myself in a bit of a predicament….

You see, I cannot get the support I need. I saw the doctor, who said I’d probably not have success with CMHT, as I wouldn’t meet the criteria to receive their support. There’s no counselling service in existence unless I go private. And given that I don’t work, I can’t afford to pay to go private. So I tried an IAPT service… unfortunately I experienced a problem during this, which wasn’t handled urgently enough or in the best way, and further worsened my mental health… I felt more suicidal, my self-harm increased dramatically, my self-esteem plummeted. And I’m now trying to pick up the pieces alone. I’m not convinced they were set up for someone like me. I feel they’re more for those with mild/moderate depression and anxiety or phobias. This resulted in me feeling like a burden, and too difficult… ultimately a ‘lost cause’.

So I have nowhere to turn now. I cannot afford to go private. I shouldn’t have to. There used to be support for people like me in CMHT, but now it’s like those with BPD have been abandoned. And given that one of the major issues within BPD is abandonment, I find this incredibly troubling that we’d be subjected to that in a therapeutic setting.

 

cmht

 

I know some people with BPD are under CMHT. But this is probably because they have the diagnosis. I am trapped, because I do not have that diagnosis, as I rejected it all those years ago. Now I cannot access the services to see a psychiatrist to receive the diagnosis. So I will never get the support I need. I know those with the diagnosis often don’t get the support they need. But I feel even more stuck, because it feels like nobody understands my battle.

This is one aspect of my mental illness I want mental health professionals to understand…. I am very good at pretending to be okay. I have a lot of pride and dignity, and I contain how I truly feel, because I don’t want people to see me how I really feel. I don’t want to upset / disappoint / trouble other people. I want to maintain control over myself. I’m a very introspective person… I read up about my illness, to make me feel less alone with it and to make sense of it. So I seem knowledgeable / ‘intelligent’. On the outside I may look calm, collected, ‘together’, and even confident and happy at times. This is a mask. One I can’t wear much longer.

All my life I have had this problem – people couldn’t understand why I could do some things, and not others. They couldn’t understand my anxiety, or my difficulties. Because it wasn’t blindingly obvious. They probably thought I was making it up. I never show my reality outside of my house. I don’t like to cry in front of people. I don’t like to get angry. I don’t like people to know I’m struggling. I don’t want them to know about my suicidal thoughts and self-harm.

I may look ‘normal’ to the naked eye, but if you could see the storm underneath… if I could show you how I’m really experiencing the world, you would be shocked. You would be horrified and probably deeply upset by it. But I cannot externalise any of this, because I don’t want to lose control. I don’t want people to see me that way, for fear they will never see me any other way. I don’t want to hurt those who love me. I don’t want people to look down on me.

 

shocked

 

But because I don’t have public breakdowns…. because I don’t try to throw myself off a roof…. because I don’t slash at my arms in front of people, screaming “Just let me die!”…. people don’t know that’s how I’m feeling inside. They think I’m more capable than I actually am. They expect more from me, which overwhelms me and when I can’t do it, they can’t understand why. Just the mere fact I can verbalise what my inner experience is, makes people think I’m fine, when I’m not – I’m just trying to express the inner turmoil in the only acceptable way I know – with words. Because I can’t release it physically, I hope that talking about it will ease the burden… but the burden is actually keeping it physically hidden. And nobody takes it seriously. ‘Actions speak louder than words’. So it feels like it’s going to take me giving up control and losing the plot completely, for my pain to be taken seriously. And what if I still don’t get the support I need? Do I spiral until I end my life? I won’t have control any longer, and that puts me more at risk of acting on my urges. I’m scared of letting go. But it feels like mental health services don’t know how to help if they don’t see someone standing, bleeding in front of them, incoherent.

I actually had a therapist tell me to go away and think what help I wanted from them, as long as it’s within their skill-set. With all due respect to you all, you are the mental health professionals…. you know what your skills are, therefore what you can offer. You know all about mental illnesses and what therapies may help an illness. Yes, I am an expert in my own BPD as I’ve lived with it all my life… but I don’t know what options I have. I don’t know what help there is. It’s not my job to know. I’M THE PATIENT. If I had a total breakdown and showed how I feel inside, you would have to help me. You would know HOW to help me. You would take the lead, do your job and try to heal me. But because I stuff it all inside, so nobody can see, you think I’m capable of doing your job for you and deciding what will help me best. I am the patient, you are the professional – please tell me how you can help me, and if you yourself cannot do it, then please point me in the direction of someone who can.

 

I feel isolated. I can't get the level of help I need as I don't have the diagnosis, and can't get

 

I need to feel there are options for me. Because right now I don’t. I don’t see a future for me. I can’t see me getting through this, because I have nowhere to turn. I feel isolated. I can’t get the level of help I need as I don’t have the diagnosis, and can’t get the diagnosis because of lack of access to the services… so I have no ‘label’ to explain my emotional turmoil…. on top of that I don’t let it show, so people probably question if it’s really as bad as I say. So in a sense I feel I constantly have to prove I’m as ill as I say, but I can’t do this by showing them, I can only tell them… but if they don’t SEE it they don’t BELIEVE it. So I’m also stuck in that way. I’m trapped within myself. And I’m trapped within the mental health services. Nowhere to go. Nobody can help me. And that makes me feel suicidal.

Another thing I want you to note is this: If you ask me if I have thoughts of suicide and I say yes, but that I wouldn’t act on them, don’t just believe me and carry on as if it’s not a risk. I am afraid of the consequences of admitting to wanting to act on these thoughts. So I’m never going to tell you that I might do it. This is how people end up dead. They tell professionals they’re okay, it’s accepted and then they act on it. When I was on a course recently I had a conversation with a therapist, and they asked me if I could keep myself safe that night… I was the most honest I’ve been about it, and said that it would be difficult. I said I would try, but I went home and self-harmed, ending up at the MIU. I knew this was going to happen but didn’t tell them. I don’t want to burden people. And I don’t want them to judge me. I want to seem like a rational adult. 

I self-harmed during my course, and this was discovered by one of the therapists, who had to treat me and advised me to go to the hospital. It was NEVER my intention for anyone to know about it. I was hidden in the toilets trying to treat it myself. That was the closest I’ve ever been to revealing my reality. They saw me crying, panicking, they saw my wounds and scars…. I was a mess that night, and I felt ashamed to have let the barriers down, and let someone see the mess inside me.

This is what I mean…. I feel ashamed of the thoughts I have, the emotions I feel and the way I would behave if I felt it socially acceptable. I know some would think if you’re really that bad you’d have no control over it – well the incident at therapy was one example of when I lost control. You might think it can’t be controlled, but you don’t know me. I have major issues with control, and I guilt-trip myself into maintaining a certain image. I think I would be letting a lot of people down if I didn’t give a damn anymore and behaved how I wish I could. Control is possible, whilst being very unwell. I’ll tell you how I know this… because I can feel it slipping away. I am about to lose control. And it terrifies me. I don’t know what is going to happen when I lose that control. I don’t know what I’ll do, what the consequences will be, and I fear losing myself in the process.

The control I exert over my own mental illness is such a heavy burden. It is like I’ve got myself chained up inside. Like I’m holding my reality hostage. So believe me it’s there, and it’s possible. It’s why every single time I say “I can’t do this anymore” I become one step closer to not doing it anymore…. not hiding it anymore.

 

I know some would think if you're really that bad you'd have no control over it – well the incident%

 

I know that when I finally lose control, I will feel so ashamed that I will not want to live anymore, and I need to know there will be a safety net to catch me. I need to know it’s safe to let go and lose control, and fall apart, and someone will keep me safe. Otherwise when I finally show you all the pain I’ve locked up inside, I’m not sure I will make it out the other side. And I don’t really want to die. I just want life to not hurt so much. I want people to care about me. I want to have something to live for.

It shouldn’t be that I have to reach utter crisis point to get the help I need. The help should be offered to prevent that risk to my life. That’s what makes me feel totally worthless – that I’d be left to reach that point where I might die, before you’ll help me. It shouldn’t be that way. But I can see in my case that’s the way it’s going to be. Because nobody understands BPD unless they’ve had it. And nobody can understand a mental illness that they can’t see. If the only visible sign I have are my self-harm scars, then nobody could ever understand what leads me to cause them. This is my personal interpretation of ‘quiet borderline’. I know many don’t agree with me on this, and I’m still forming my own opinion on it, but my BPD is so hidden most of the time, that nobody would believe how much I’m suffering.

 

crisis

 

With most illnesses the strategy seems to be to treat the symptoms… but if I hide the symptoms, and only write about them, then those wanting to treat them cannot do so. And I’m neglected. I just want one mental health professional to stick with me while I fall apart. I want them to believe what I’m experiencing and let me express it, whilst protecting me from myself. I just want to feel safe and supported. And I really don’t right now. I don’t know who I can turn to. I don’t know what to do. I feel powerless.

You see we’re not all that different – you feel powerless to help me, I feel powerless to get help…. the only difference is, to you I will just be one more person who couldn’t be saved… a statistic….but for me, I will be no more. Gone. Dead. So please, will someone do SOMETHING to provide the help and support people like me need in this country? I don’t want to die. I need help. Someone please create that help – don’t leave us all to an ugly fate. There may be some misconceptions out there about those with BPD, but I know from talking to many of them, they are the loveliest individuals with a heck of a lot to give. And to lose all those lights from the world would be a tragedy.

I know you try your hardest to help us where you can, but more people need to unite to get help for those of us lost in the system… those of us in the middle, who are ‘too ill’ for IAPT services and ‘not ill enough’ for CMHT to help us… at least that’s what I was told. Where are we supposed to turn? BPD puts us most at risk of doing harm to ourselves, or taking our own lives… we are desperately in need of support. Please value our lives enough to do everything you can to get us that support. I don’t know what my ‘rights’ are as a service user. I don’t know what’s on offer to help me. It feels as though different sectors of the NHS can’t agree on what help there is for me. Can you please start to communicate with each other and come up with a strategy, so that when someone in dire need comes along, they can be directed to the right support? I feel like I’m floating around in the system and don’t belong anywhere, which is a reflection of my experience in life… the feeling I will never belong, that I’m worthless and a burden. These beliefs are being mirrored in my experiences of trying to get help. It feels like my life doesn’t matter. And too many others have this experience. Things need to change.

 

mirrored

I want to start campaigning for more support for those with BPD. And when I feel mentally stronger this is something I will look into. In the meantime, I hope those within the profession can do all they can to change things from the inside. I know it’s a huge ask, and not something that can just happen – it takes a lot of work and money. I’m just asking if you have a voice within the profession, please use it to save lives. Those most in need are being left behind. This cannot be right. I know that most of you would agree, and are just as frustrated at the injustice. Hopefully enough of us can take action to try and bring about a change.

Thank you for taking the time to read.

xxxx

3 responses to “Open Letter To MH Professionals, From Someone Lost In The System.

  1. Very similar story here.
    Did DBT in 2008, was under CMHT for few years then discharged. There was nothing more they could offer (PD service too busy to take any referrals/or refused mine, who knows) so I forced myself back into work and agreed it was time to leave cmht.
    I do and did have the diagnosis but it made no difference to the outcome or treatment.
    Since 2015 I’ve seen a GP 2 maybe 3 times for other reasons and when I’ve mentioned the depression have been told I probably just need to manage my expectations!!
    And because I hide it all and go to work, and go to uni, everyone thinks everything is great and if I attempt to say otherwise,just assume it’s a ‘bad day’ and I’m just being negative.
    I think what helped is I accepted years ago this is just the way it is, nobody is going to help, and resigned myself to it. The last bit of fight I had inside me pushed me to find work and give life one last shot and I’m still here 3years later, It’s better than it was.

    I actually find going on Twitter etc makes it harder because you tend to compare yourself to others and wonder why you dont deserve the help other people seem to get.
    I limit the amount of time I spend thinking and talking about mental health and especially bpd, because it winds me up and annoys me.
    Im not sure the way i go about it all is the right way because firstly we shouldnt be left like this, and also, it’s just hard and miserable and shit!!
    But yeah, I wish I knew the answer for us all!
    Xx

    Like

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