My Kind Of BPD

Is anybody else still out there? I'm still here, despite my fits and starts of disappearing. My laptop broke again, and I've been accessing the internet through my iPad and through a friend's laptop. My memory is no better, and so I forget about things that I usually keep tabbed (such as this blog, and Flight Rising, and Facebook...) when that happens.

Today I've been thinking about stigma, and how even those of us who fight it can still be vulnerable to it. In particular, I've been thinking about the stigma of Borderline Personality Disorder, and the ways in which I've bought into it without meaning to. Have you ever said, "I have BPD, but I'm not a typical Borderline", or something similar? I have, frequently. I seem to always be explaining to people that even though I have BPD, I'm not "that" kind of Borderline. Partly I want to be understood for the individual I am, rather than a stereotyped version of my disorder -- but mostly I'm trying to distance myself from everyone who is "that" kind of Borderline.

And every time I do that, I drive another nail into the stigma-coffin. Every time I say it, I may as well be screaming out that there is a "good" BPD and a "bad" BPD. There's not. There's just BPD, in varying degrees of intensity and with myriad presentations of symptoms. It's all the bad kind. It's all the good kind. It's all BPD.

Given that, maybe instead of rushing to defend myself by sticking that "bad" label on the people with different symptoms, I should quit telling people what my BPD isn't... and start talking about what my BPD is (bearing in mind, of course, that my comorbid disorders bleed into BPD and each other).

• My BPD is a lack of self stability that shows itself in an uncanny ability to unconsciously chameleon. By this, I mean that without intending to, I often change myself according to the people I'm around. This change will include everything from words and mannerisms to thoughts and even beliefs. It's never being sure of who I am, or if I really like the things I like. It's constantly wondering how others see me, and trying to create a self-view based around that, because it's the best I can do.
  
  
• My BPD is excessive self-monitoring and criticism. Everything I do comes under the deepest of scrutiny by my own mind. Was that too blunt, too subtle, too rude, too ineffective? Is that appropriate to do/say/ask? One thing is of particular concern since my diagnosis: "am I acting in a way that reinforces BPD stigma?"
  
  
• My BPD is interpersonal hypersensitivity. It's never knowing whether what I'm sensing from others is their stuff, or my own. It's misinterpreting others' emotions and needs as being my fault in almost every situation.
  
  
• My BPD is intense relationships. It's needing to be part of everything, to feel included. It's always following along, feeling like a sheep or a lost puppy. It's over-involvement in other peoples' lives until I think they're sick of me, whereupon it's backing off and hiding away.
  
  
• My BPD is a preoccupation with, and terror of, abandonment. It's weighing up constantly what I can say and do to not lose the people I love. It's always being the one to say sorry, to shoulder the weight of fixing anything that goes wrong. It's the unconscious chameleon behaviours to fit in, to belong. It's being afraid to eat in front of the people I care about until I've done it enough times to be sure I won't screw it up so badly they don't want to be around me. It's terror of my friends' friends, because there's a perception that the opinion of those peripherals will influence the opinion of the people I care about. It's needing to be part of everything, to feel included. It's being a doormat, because if I give everything I have and am, then people will maybe have reason to stay.
  
  
• My BPD is emotional hypersensitivy. It's feeling everything in an intense way - as though I'm the equivalent of a burn victim, my emotional skin gone and the nerves laid bare. It's knowing that people think I'm a drama queen because everything is so out of proportion, and still not being able to control or damp down that intensity. It's loving so strongly it wants to explode out of me, and it's hurting so deeply I can't bear the weight of my own heart.
  
  
• My BPD is difficulty recognising and managing my emotions. It's being so afraid of my own anger that I am only just beginning to feel it instead of automatically transmuting it to a different emotion. It's crying silently and fighting it the whole time, because it feels so wrong not to. It's fighting every emotion, trying to run and hide from them, and failing every time. It's being overwhelmed almost constantly because I don't even know for certain what I'm feeling.
  
  
• My BPD is an overabundance of anxiety and depression. It's everything I already covered under terror of abandonment & emotional hypersensitivy, and so much more besides. It's fear of being imperfect, fear of losing control. It's shame, and guilt, and the weight of clinical depression bearing down on my shoulders. It's fear of, and difficulty adjusting to, change.
  
  
• My BPD is impulsivity. It's acting in the moment, despite my intentions to follow a different plan. It's spending hours scrutinising myself, and then out of nowhere blurting out something utterly inappropriate. It's writing out a shopping list, then ignoring it and spending all my money on junk food and craft material instead. It's taking out something for dinner, then deciding at the last minute to eat something else, and doing it on a regular basis.
  
  
• My BPD is self destructive behaviours. Sometimes, it's suicide attempts because I don't want to be here anymore, because I'm done and I just want out. Most of the time, it's self harm, alcohol abuse, disordered eating. It's mixing uppers & downers because I know it messes with my body. It's over-eating, under-eating, and it's eating foods that will make me uncomfortable. It's giving up just when I get near to reaching my goals, and it's pressing on [emotional] sore spots. It's making decisions based on what will cause me the most amount of harm/pain, because all I really want to do is destroy myself.

My BPD is a disorder and a disability. It's not the good kind of BPD. It's not the bad kind of BPD. It's just my kind of BPD. What's your kind of BPD?

Tsunami (Otherwise known as "Where I'm At")

Some of you may know/remember that November is often a difficult month for me, and despite last year's improvement, this year was something of a set-back. I don't know how obvious it's been (either here or elsewhere), but my mental health has been declining for quite some time. There were several things feeding it, including another visit with my father, but the result is that for particularly the last several months, I've been very unwell.

I've been increasingly paranoid, guilty and ashamed, and withdrawing/guarding my comments, because my thoughts lead me to believe I'm unwanted anyway -- every comment or lack of comment has looked like a closed door; I've been losing large chunks of time and not even realising it; the hallucinations that are part of either my depression or the BPD, and indeed my entire sense of reality, have all gradually spiralled out of control; and all my efforts to right the roller coaster have only confused the issues more.

As a result of all this, after what had been I think around 3 years, I was admitted to the hospital's psychiatric unit for just over a week. I suppose I think that if I had just worked harder at being well, if I had tried harder, this wouldn't have happened. I find myself feeling deeply ashamed to have been admitted back there when I know that I don't think badly of anyone else who is admitted.

The upshot of all this is that my medication and my diagnosis have both been changed, and that there is talk of more intensive support being available, especially since the program I've been seeing my private psychologist (Sonia) under has now ended, leaving me with four sessions until next year (quite a drop since I had been seeing her 2 to 3 times a week). I'm not certain exactly what that support will entail but there was mention of a case manager to help organise some sort of housing, a public psychiatrist once a month or so and someone from the Mobile Intensive Treatment team to see a couple of times a week.

In the meantime, what I do know is that I've been put back onto Avanza (mirtazapine) - though how long that will last (as its sedating effects are already beginning to wear off) remains to be seen - and my diagnosis has been officially changed to also include Dissociative Identities Disorder. I must admit, it feels quite surreal to have that on my record after spending 12 years knowing but undiagnosed. I'm still sorting through how I feel about it, that's for sure.

There's been a lot of upheaval. There's still a lot of upheaval. I'm doing better than I was prior to my admission, but I'm still very unwell and struggling with many of the same issues I was having difficulty with before I went into hospital.

Following Up From Turbulent Waters

Two weeks ago, I wrote a post about what happened when my GP and I tried to get me back into the mental health clinic here. I received some supportive responses (both here and elsewhere) and I received one comment that has been on my mind.

I thought about replying to this on the original post, but most of what I have to say feels appropriate as its own post. I won't lie and say I didn't have an emotional reaction to the comment - in truth, I had an extremely strong one. I felt rejected, dismissed and invalidated; my knee-jerk reaction was to quit and never write here again. Obviously I've chosen not to take that path, but then I had other paths I could take. Should I let the comment stand? Should I treat it as gospel and take it to heart or should I dismiss it entirely?

After a couple of weeks reflecting, I decided to do neither. It's important that I don't simply take on board whatever anyone says about me - but it's equally important to me that I'm open to criticism and don't deny something simply because I don't like hearing it. So I reflected; I thought about what was said, and about the beliefs I have around the statements used, and I read my own post through several times.


So, in response to,

"Anonymous said...

You have to see it from their point of view - if after all that help you're still not much better, why would they invest more time and money in you? They've already invested a lot in you and it didn't do a whole lot, so they are now giving other people a chance. Don't go playing the victim."


I would like to start by saying that I don't believe, in this situation, I am "playing the victim". That term, to me, is about not making use of the power that you have. I am, in actual fact, powerless over what decisions the Mental Health clinic makes about my care once my part is done. Their decision was not in my power - what was/is in my power is my reaction. That, I accept responsibility for entirely -- what I choose to do with and about their decision is in my power (within my own limitations) and nothing to do with Mental Health.

However, that "within my own limitations" is important. It's not an excuse to say "to Hell with it" and give up - but it is important for me to remember that I deserve to give myself leniency for things I legitimately cannot help. Everyone has limitations and nobody is perfect. One of my limitations is that DBT was not enough to stop my self harm.

Whether "anonymous" intended it or not, the implication behind the comment was that because, after investing so much time and effort into me (I assume through my course of DBT), I was not better "enough", I do not deserve further treatment. In my view, this is wrong. Everyone deserves health care. Everyone.

If we apply this logic to physical health concerns, it becomes much more clear. If a skin graft operation is unsuccessful for whatever reason, the surgeon does not simply cross the patient off and move on. He or she sits down and thinks about what to do next - and then puts the options into place. Sometimes this means that the procedure is repeated. Sometimes it means that alternatives are explored. If a surgeon simply threw up his hands and refused further treatment because the patient was not "better enough" there would be an outcry.

Why 'would' (or 'should'!) they invest more time/effort/money in my health? Because they haven't tried everything. Because there are avenues that have not yet been explored. Because DBT is not, and was never intended to be, a one-size-fits-all cure. The fact that DBT has not helped me "enough" doesn't mean I am not trying, it doesn't mean that I am beyond help, and it should not stop me, or anyone else, from receiving further treatment.


And yet... this is what is happening in the mental health industry, especially when dealing with those with Borderline Personality Disorder. I don't mean just locally to me, either, this is happening all over the world. Mental health problems are just as valid as physical health problems, and there should not be barriers to receiving treatment and care based on the fact that you are not "well enough" after completing a particular treatment.


There were two other things I'd like to address from that comment.

First, I'd like to dispute that DBT didn't "do a whole lot" -- I think most people who know me well have seen massive changes in me since DBT. Not curing me is not the same as not doing much.

Second, I'd like to say to everyone that although I have allowed anonymous comments so that those without an account can still comment, I would very much appreciate knowing who leaves comments. As long as things are kept respectful, I don't mind people having opinions that differ from mine, and I'm okay with being called out on things... but I don't think that doing so anonymously is generally respectful. In my opinion, if you don't believe in your opinion enough to stand by it as yourself, then you don't believe in it enough to say it with good intentions.



Take care of yourselves until next time, and may we all find our own small fences along the way.

Turbulent Waters: I'm Really Not After A Miracle!

It's no secret that life's been a bit of a rough trot here, lately. Part of that is due to circumstances in my life right now/recently, part of it is not having medication that works properly, and another part is not having a large enough support network offline.

Whatever the reasons, though, the end result is the same: I've been struggling for a while, and things aren't getting better on their own. After yet another bout of what's being termed "severe self harm", my doctor last week decided to push for me to be seen at the free mental health clinic again. I told myself I wouldn't allow myself to hold out too much hope for a better outcome than last time, I told myself that I would be okay if/when nothing came of it.

Everyone else was so sure something would come of it. Surely. Surely, they had to see that I wasn't making it on my own now. It's been just under a year since I was closed off the books, a year since I did DBT. I've been using my skills, even this blog itself is proof of that. I fight every day to be okay. Surely they had to listen now. I started to let my hopes rise. And then I was given an intake appointment.

So I began to get more invested in the outcome. I began to believe that I had a chance at getting real help again. And then the call didn't come when I expected it.

I felt let down, but I told myself that maybe they were just busy. Maybe I misinterpreted what Intake had said, that I'd got it wrong and that they would call at a later date. A few days after I had originally expected the call, I was about to head out when my mobile rang.

"Hi C, it's [old case manager] here from mental health."

My heart skipped a beat. This was the case manager I'd worked with prior to DBT; the one I'd worked really well with and trusted. I thought she might be calling to say she'd be my case manager again.

"I just wanted to let you know what the Intake team have decided about your case. Now, you've done DBT. You clearly don't want to stop self harming, there's nothing more we can do for you. You know there's no miracle cure, medication isn't going to fix you. We have decided not to take you on."

I was gutted. Crushed. The crushed hopes were bad enough alone, but to have them crushed like that by [old case manager] was like being told by Santa Claus that he wasn't even going to bother leaving you coal. A few minutes of silence followed where I fought my tears before she added insult to injury with,

"What did you even expect to come of this? What do you want?"
"I... I don't know. I-"
"Exactly. So, bye then. Good luck with everything."

I was hurt. Betrayed. Crushed. Gutted. Afraid. For a little while I was even furious. Not just angry but actually furious! How could they? I have fought so hard for so long. I try so hard, I have made so many changes. My feelings were a confused jumble of negative emotions and I cried fairly hard at first. I pulled myself together and left for my appointments, but the emotions didn't go away. They're still right there, because this is a big hurt.

It got bigger when I went to report back to my doctor and found that mental health had got there first and read him the riot act about how manipulative Borderlines are. My formerly supportive doctor greeted me with "do you even want to stop self harm? How much?" then proceeded to tell me again that there is no miracle cure, and told me that since I have done DBT mental health are not interested in wasting their time or mine.


I am tired of being told that there is no miracle cure. I am not looking for one! I'm not afraid to put in the hard work, I've been doing that. It's not working (enough). I know medication makes a difference for me, when it works. I know that. Why won't anybody in a position to do anything about it listen to that?

Dear mental health professionals,
Please, stop assuming that because I happen to have a label with a bad rap, I fit what that label means to you. Please stop assuming that wanting medication that works for me is synonymous with "I want a miracle cure". Please stop assuming that because I'm struggling to stop self harm it means I don't want to. Please stop assuming that I have manipulated my GP into advocating for my treatment. Please just stop making harmful assumptions about me!

I'm asking for help, not a cure. If I didn't have the BPD label, you would be falling all over yourselves to help me. Your labels are supposed to be there to help, not hinder, my treatment.


And now, since mental health is again a non-option, we're back to square one. Where do I go from here? It's so tempting to give up - all the professionals have, why shouldn't I?

Because when I give up, there'll be no chance for it to get better. And because I deserve better than that. I am getting a psychologist referral, and I will take my 6-12 free sessions and do what I can with that. It's better than nothing.

And so I go on putting one foot in front of the other and doing my best to get through each day however it comes. Imperfectly, certainly, but until I can move (something that I can't do until I receive the money from my settlement over my knee which is currently held up due to an error) it's my best option.


Challenge and cheerleading statements:
* Things are not as hopeless as they seem. This isn't forever.
* This situation does not reflect my value.
* I deserve better than to give up on myself.


Take care of yourselves until next time, and may we all find our own small fences along the way.

Self-Destruct Sequence

Several days ago, my next entry seemed clear. I had it all mapped out in my mind - at least, in vague terms, I did. I knew what paths I needed to follow in telling about the last few days (eventful) and those to come (hopefully full of pleasant event scheduling). My best friend suggested "just write"; I had a tantrum and did, then deleted it all bar this section and started again with a topic in mind.

I've been making a lot of questionable choices again, the sort of choices that are too consistent, too frequent to be labelled as mere "slips". Those have their own consequences that I'm facing -- one of which was my GP's reaction. You might recall that he wasn't happy about Mental Health discharging me - he was even more unhappy when I turned up two days later requiring care for more new (and somewhat serious) wounds. He was, in fact, so unhappy that while I was still in with the nurse, he got on the phone to Mental Health. In no uncertain terms he was told what I knew he'd be told - they're happy for me to be discharged, there's nothing more they can/are interested in doing for me.

I took this information with me when I saw my CASV counsellor, and I spoke about my interpretation that "I'm less worthy than my DBT peers who have been retained/referred on to other services". Interestingly, my counsellor was angry on my behalf about the way things have gone in regard to that. She suggested I write a letter to the state head of health, and when I explained that I didn't feel there was any point -- I'm all too aware of the fact that this was only my perception of events, that I was choosing to see it that way, and that that meant it didn't really matter. At that point, she called me, straight up, on minimising. Yes, it is my perspective -- but that doesn't mean I don't have the right to feel upset about what transpired. I think we're going to work very well together.

The discussion with my counsellor lead us through a variety of paths and on to what I call my self-destruct sequence. There are lots of things that set it off, and lots of ways that being self-destructive comes into play, for me, but at the moment I'm talking about a rather specific sequence of events (which, incidentally, ties rather nicely in with my entry about self value).

It starts easily enough. Things will be going along - good, bad, indifferent. Obviously if things are going poorly, the likelihood of falling into this pothole is higher, but it often happens no matter how 'well' things are going.

The triggering event is generally a comment or an internal realisation. Somebody will offer a compliment, or tell me I'm doing well: things that are meant to reassure. Even if I at the time appear to react well, somehow it gets twisted inside me. Suddenly this good thing is not good: such begins sabotage and self-destruct.

Coming from a strengths based perspective, my counsellor admitted she'll find it interesting to work around this -- but it seems that it's a challenge that we're both up for. We're going to call it my gentle adventure to WISEness, and one of the things we're going to do is to look at me giving myself credit for decisions I'm making out of my WISE mind.

Since I'm very creatively focused, and do well with set homework, my task until our next session is twofold:
1) Begin gathering together materials on what my adventure to WISEness means to me; and
2) Try to make note of times when I have wanted to give in to self destructive behaviours and haven't.


Today's thought challenges/cheer-leading statements:
It's okay to look after me.
I'm not a bad person.
I can be there for my friends and look after my own needs as well.
I'm doing the best I can with the knowledge and skills that I have available to me at the moment.
Choosing positive coping skills doesn't have to mean denying that things are difficult at the moment.


Take care of yourselves until next time, and may we all find our own small fences along the way.

Even amidst my disappointment, there is growth

Although I had originally intended to follow through on my individual criterion focus this week, in sitting down to actually do it, I discovered that I could not get it to just "flow" quite right. In fact, everything I write tonight sounds either stilted or whiney. I'm scatty and I seem to lack any semblance of an attention span, but I've written and rewritten this entry a dozen times over, and I just cannot find my comfortable Blogging voice.

Today has been a difficult day for me.

After DBT ended, I knew that the plan was for me to be released from Mental Health, but when I spoke to my psychiatrist and let her know my concerns, she said she would talk to the team, and then we would discuss what was to happen at my next session (today). At that session I also made a completely unsuccessful attempt to be placed on a different medication. I resolved that I would work harder to get my point across this time. I did a bit of cursory research and came up with two alternatives that we've not yet tried. I made notes reminding me to use my DEAR MAN skills and to stand my ground. I also included a note and phone number to remind me to have her call my GP, as per his request from the last time I'd seen him. I assumed that once all of that was done, we would finish up and that would close my file, and I surprised myself by finally being more okay with it than I'd expected.

So, when I turned up for my appointment today, I was prepared. I held my folded paper in my hand, a tangible reminder of the work I had done, and the importance of being effective. I shook in my boots as I entered that room, but I worked to Appear confident. (Those of you familiar with DEAR MAN will recognise the A from "MAN" - everyone else, please just be assured I have not decided to begin random capitalisation!)

Before I had a chance to even begin to Describe the situation, my psychiatrist spoke. "I closed your case yesterday and sent a letter to your GP."

I froze; all of my false confidence deserted me. Where was the discussion she'd spoken about last month? I had come to terms, in part, with being transferred solely into my GP's care - but I still wanted discussion. I wanted to discuss the medication issue. I understand that medication won't solve my problems with self harm; I know that medications won't stop me from feeling. On the other hand, I have experienced (briefly) what it is like when the medications are working, and I would like to experience that again. And perhaps most of all, I wanted my GP to air his concerns to the psychiatrist so that she could reassure him, because my reassurances mean very little. I, after all, am the patient who presents regularly with what he terms "severe" self harm; the one who reassures him she's fine, only to turn up with new injuries a couple of days later.

I was humiliated when the next question she asked was "what happened to your face?" I am a skin picker. I don't view it as self harm (although throughout DBT, Sandy tried to tell me it was) and I feel that my reasons behind picking are very different to my reasons behind self harm; it is closer to a compulsion than an urge, and I am even more deeply ashamed of it than I am of self harm.

She spoke to the air for most of the time I was in that room. I nodded occasionally, said "yeah" a few times, and stared at a fixed point. I didn't bother bringing up the medication; without any prompting she launched into a speech about how I know the skills, I'm simply not using them; and another speech about how no medication will help me at all. I did make an attempt to have her call my GP, but she dismissed it, telling me she had written him a letter. Mostly what ran through my head was "don't cry don't cry don't cry don't cry don't cry". I feel dismissed and rejected; I feel abandoned. I feel an extremely strong urge to self-destruct. Those are not emotions. I felt sadness, disappointment, guilt and anger. I feel fear that my GP will not believe that I tried to get her to call him.

I find that, also, I am disappointed that I went to pieces so quickly, disappointed that I didn't make better use of my DEAR MAN skills; and yet even in this I can see signs of change.

I allowed her to see that I was upset. I didn't talk to her about it, but for once, the emotions I displayed were congruent with the things I had been telling them.

I did attempt my DEAR MAN skills. This is growth, many's the time in the past I would let everything slide rather than ask for anything.

I identified and expressed the emotions I'm feeling about the situation.

I didn't listen to my urges to self destruct.

Apologies for the lack of thought on this entry, and the over abundance of whine. Perhaps tomorrow my brain will work better again.


Today's thought challenges/cheer-leading statements:
These feelings are unpleasant, but they will pass.
The urge to self-destruct is just an urge. I do not have to listen to or follow any urge.
I am adjusting. It will get easier. I am doing okay.
I have a good GP. If I explain to him that I asked her to call and she felt she had said everything that needed saying in the letter, then he will understand. If he does not understand, I have the skills to handle that situation.
This is not a sign that I am not worth helping, that I have been thrown away or that I am not good enough. This is a vote of confidence in my ability to manage myself for a while.


Take care of yourselves until next time, and may we all find our own small fences along the way.