a letter to my doctor and CPN

Dear doctor /CPN

I am writing this as someone who has had BPD for 20 years and who has spent 15 of those years in contact with Mental Health Services, including countless hospital admissions. It is only over the last 2-3 years that I have gained enough insight and understanding to make sense of the maelstrom of unidentifiable emotions, thoughts and feelings that flooded me at the start and are only now easing. How I wish I could have communicated this all those years ago. The irony is that back then, had I known all this, there is no way I would have shared it with you. Anything I divulged could be used against me. Knowledge is power, a weapon. There is absolutely no way I would hand anyone this arsenal!

In my mind there are two categories of clinicians – those who can work with borderlines and those who can’t. If you are one of the latter, work at damage limitation. Treat BPD’s with respect, and don’t be judgemental. You may not understand them, you may find them difficult, but they are people with feelings who have been damaged by life. If you can’t help, just don’t make things worse. I am not criticising you, indeed I include myself in this category (I would have throttled me years ago out of sheer exasperation!). Some of the people who have impacted me the most are those A & E nurses and psychiatric support workers who didn’t understand me or my diagnosis but nonetheless recognised my pain and treated me kindly. They made me feel valued and cared for.

If you can / are willing to work with borderlines then the following may be helpful.

I have grown up in an environment full of fear, where the goalposts are never in the same place two days running, where black becomes white, up becomes down and truth becomes lie. I find it almost impossible to trust and am suspicious of anything and everything. My world is black and white. There are no shades of grey.

What do I want from you? Actually I want a hell of a lot so if you’re not up for the challenge don’t try to engage with me! If you dip your toe in the water only to retreat you will confirm my view that I am not worth the effort and am beyond help.

You can expect me to do my best to push you away to prove to myself that you are the same as everyone else and that as soon as you discover the real me you can’t run away fast enough. I need you to persevere, to prove me wrong, to show that you understand my insecurities and actions.

I will be unreasonable at times and deliberately push your buttons. Do your best not to react. If you do react, then you will need to talk to me about it and explain how you were feeling and why. Otherwise I will see it as a rejection. I tend to put people on a pedestal and when they reveal that they are not perfect I cut myself off from them. You need to be able to get across that you are there for me but you are human and will make mistakes as will I and that I can still trust you.

I am emotionally stunted and have the social skills of a child. This causes problems.

When a young child begins to assert itself, express preferences and dislikes they are unskilled, tactless and crude in their methods. However, loving parents are tolerant and understanding. They nurture the child and teach them how to achieve their wishes within society and family rules, and considering any knock on affects on others around them. An adult is expected to have learnt these things. If an adult acted as the child they would be seen as selfish, manipulative and uncaring of the impact they had on those around them.

Welcome to the world of the borderline. In many regards my social skills are those of a young child’s – crude with little appreciation of the wider affects, yet I am judged as an adult who should know better. When challenged regarding my behaviour I am upset and bewildered. I hadn’t realised what I was doing, how it would be perceived. Yet again I have got it wrong. I’m a bad person.

I need a clinician who understands my intentions and who can help me learn better ways of communicating. Having not felt safe and secure enough growing up to express my wishes or discover that I have a valid opinion, my attempts as an adult to do those things are likely to be as crude and clumsy as those of a child. I need nurturing and guiding, not criticising. You need to be able to point out to me ways in which I have offended without crushing my fragile esteem. And please avoid the word manipulative! To me that suggests malicious intent. My intentions are not bad, I just haven’t learnt effective ways of carrying them out.

In order to feel safe I need firm boundaries that make sense to me. I may not like them but if there is a good reason for them that is explained to me I will for the most part accept them. Uncertainty panics me. I need order and routine. If you’re not going to be available at times please give me as much warning as possible. I need time to get my head around things. I have real problems with abandonment so I need you to be dependable. If you miss an appointment without prior notice please get a message to me ASAP as I will be devastated.

You need to be straight with me. There will no doubt be times when you keep things from me. Maybe it’s not for you to tell me or you don’t think I’m ready to hear something. Whatever the reason don’t hide it from me. I will be on to an evasion or lie in a flash. Just be honest and admit it. I am suspicious and mistrusting by nature and conditioning. You will have to work hard to help me be trusting and to expect (or just hope for) the best and not the worst in any given situation.

You can expect me to push against boundaries. I’m testing you along with the boundary. It is a way of seeing if I can trust you. If you give way, I will take advantage. But neither of us will benefit. I need you to be flexible but only with good reason, not just to make life easier and shut me up.

I will be ambivalent. I’ll run to you desperate for you to help me, to take away my suffering. Then I’ll push you away. I don’t want to change. I can’t go into the unknown, the risky. I’ll block you out, stick my fingers in my ears (not literally, although that’s not out of the question), bury my head. I don’t want to do anything different, I just want the bad to go away.

I find it difficult to know what’s going on in my head. It’s as if my head is a cauldron full of thoughts and feelings that are swirling around so fast its impossible to isolate and identify any individually. Often I am overwhelmed by feelings that I can’t describe, just to say that they are awful, and make me desperate to get rid of them. So don’t be surprised if when questioned about my thoughts you get a ‘I don’t know’ in response. I’m not being uncooperative, I really don’t know. (I can be deliberately obstructive, you are just going to have to learn to recognise this.)

A big obstacle is going to be my lack of self. I feel like a stranger in my own body, as if I’m not really there, I’m just observing. I feel apart from others when in company. I’m not the same as them, I don’t fit in. I’m an alien in a human body. I feel that I’m a hollow shell filled with BPD. If you rip out the BPD, there will be nothing left to hold me up. I will be empty. Even emptier. There lies a problem. The BPD makes my life hell, but it is my life. It is my only sense of self. By asking me to let go of the BPD you are asking me to amputate a huge chunk of myself.

At times it’s possible I’ll become so distressed that I can no longer keep myself safe. If an admission is needed you need to be aware that this is a two edged sword. Although I will resent being contained, restricted, I will start to feel safe, secure. The rules and routines of a ward offer stability and security, things I crave. Keep me there too long and I won’t want to go back out to a world that’s unpredictable and ever changing. What works best for me is to have rapid access to hospital for short stays at my own instigation. This offers respite in a crisis (or ideally pre-crisis) and allows me to hand over responsibility for myself for a limited period so that I can have a break and re-charge.

You definitely need to have a sense of humour (preferable warped), to be able laugh at the macabre. You also need to let me know you as a real person. I don’t mean that you need to disclose personal information, more that you need to reveal your personality. I am not going to open up to a shielded person. I need to be able to relate to you. It needs to be a two way exchange. I will not communicate with a cardboard cut-out. You will be asking me to reveal my deepest hurts and darkest thoughts and fears. Things I haven’t been able to admit even to myself. I am not going to do this unless I have learnt to trust you and I won’t trust someone unless I get to know and respect them.

These are the things that spring most readily to mind. There are doubtless plenty of other pointers I could make but I expect we all have our individual quirks and differences. My aim really was to give an insight that I hope is helpful if it hasn’t scared you off. It will be hard work and most likely a long slog but if you are willing and able, you are in a position to make a real difference to someone’s life. I’m told that amongst all the frustration that comes with working with a borderline, in-between banging your head against the nearest brick wall, it can be rewarding. I cannot express the gratitude I feel to those who have risen to the challenge and helped me.