Where’s the ‘Off-Switch’?

While I was driving home from visiting my mother this morning, I realised I was holding my breath. I think I had been doing so most of the morning, as I was terrified (yes, really terrified) that if I didn’t that ‘she’ was going to come out of my mouth.

‘She’ would come bursting forth from what is usually my nice, kind mouth with ‘her’ negativity and judgement. This fear has been building all week and was being triggered by the actions of a staff member at the Dementia Home where my mother lives. I am never impressed by this woman, in total contrast to my usual reaction and appreciative support of the rest of the staff. I don’t like many of the things she does and I don’t think she does her job well. That’s fine, but for some reason she triggers the ‘On-switch’, and I want to tear her to shreds. I think I even want her to lose her job (I am shocked by the strength of my feeling).

That’s right. I’m not always a nice person. Actually, I can be vile. I can be a total bitch. That part of me has been in existence for what seems like as long as I can remember, but actually, my memory of her just goes back to my teenage years when ‘she’ would come burst forth to spew her vileness particularly at my mother.

The explanation of ‘her’ is that I have Borderline Personality Disorder (BPD). I hasten to say that perhaps not every sufferer of BPD has this fragmentation. I don’t know. What I do know is that I do, and every so often the nice, kind, even friendly Cate will transform into this nasty, cruel, bitchy ‘she’ who I recognise well, but cringe when I realise ‘she’ has revealed herself. I don’t like ‘her’. That is an understatement. I just wish I could ‘turn her off’ when I realise ‘she’ has taken over, but most times, I don’t realise ‘she’ is in charge until the damage is done.

Read about BPD and you will quickly realise that some writers refer to us as “drama queens” (and kings, presumably). “attention seekers”, “bitches”, “monsters” even. I try to stay clear of such writers because while I don’t want to label other BPD sufferers, I know that for my own part, sometimes I am a “bitch” and sometimes I am even a “monster”. Yes, really. You might think you know me. You might think I am a nice person, but that is only one side of me. Thankfully it is the dominant side, but in the dark, lies the monster, and ‘she’s’ not at all nice.

Lately, I haven’t seen too much of ‘her’. While I admit my mother was on the receiving end of her for too many years (we didn’t ever have a good relationship anyway), ‘she’ isn’t there anymore. ‘She’ somehow disappeared from our relationship, and even though I don’t really understand the change, I am glad and relieved. My mother has enough to cope with in life, without a monster daughter. This was also the main relationship in which ‘she’ appeared so it was good to have ‘her’ gone.

There have been times lately when I have felt ‘her’ rising to the surface and about to take hold, but somehow I have been able to dissipate the rising pressure and somehow escape ‘her’ clutches. It is always a palpable relief when I can do this, but I never know exactly how it happens. I know that for me, being able to do this is a sign of mental wellbeing.

But then in the last couple of weeks ‘she’ has been back. I usually don’t realise ‘she’s’ back until it’s too late. Until ‘she’ has taken hold of me, and I am a monster. One side of me cringes as the other monster side delights in the ride. Yes, ‘she’ loves it when ‘she’ gets to be in the driver’s seat, while I just wish I wasn’t there. I quietly hope I’m not doing too much damage as my words spew forth, but ‘she’ doesn’t care.

Don’t get me wrong, I’m not talking about having multiple personalities, having Dissociative Identity Disorder (DID). This is different, and while I’m no psychologist to understand and explain the brain, I do understand that we all have different parts to ourselves. Maybe for most people, those parts are not the “monster” I see in myself. Maybe they’re not quite so marked.

Scary and a little weird, I actually find myself liking ‘her’ to some degree. I don’t like the hurt ‘she’ can cause, but I do like that ‘she’ just says whatever ‘she’ thinks. There is no holding back with ‘her’ and I like that ‘she’ isn’t constrained by… well, anything. I don’t like the damage, but just sometimes I admire ‘her’ for being free to say anything without fear of consequence. I am torn. I like this ‘me’ but I’m also terrified of ‘her’ because I know all too well the damage that ‘she’ can cause, and has caused.

Aside from hurting people that I actually care about, I have lost along the way. I have lost people. I have lost jobs. Yes, I have lost two jobs where I wasn’t able to reign ‘her’ in. I was, in those jobs, two people. One Cate was very good at ‘her’ job. Staff and clients thought I was excellent at what I did. I got high praise and was rewarded well. But in both situations ‘she’ rose to the surface in my working relationship with a boss. At the time, I had no understanding of BPD and was totally lost. I didn’t understand why this was happening. All I knew was this “monster” would rise to the surface and I didn’t know how to stop ‘her’.

Recently, ‘she’ took over and destroyed what had been a nice dinner out with someone I care about. ‘She’ ambushed the evening while I wasn’t watching and I admit now that I am ashamed of the things I said and did. Once ‘she’ took over, I couldn’t stop ‘her’. I couldn’t take back the control, and part of that was because I kind of liked what she was doing and saying. That is what I am ashamed of most. What sort of monster am I, that I would cause pain and like it?

‘She’ keeps bubbling toward the surface and I find myself holding my breath, terrified that ‘she’ will take over again and that I will lose more relationships. I am inclined to shut myself away and hope ‘she’ is prevented from rising. If I don’t talk with people, then maybe ‘she won’t be able to rise.

This is a pretty negative post. I know that. I don’t expect many ‘likes’. I am ashamed to admit that I am a monster but I know that maybe by writing about that part of me then maybe I can take ‘her’ control away. Maybe by being open to the point of feeling quite uncomfortable with such disclosure, I might take her power away. Perhaps by bringing that monster in from the dark, to bring light onto how she is, I will find a way to take control again. I hope that it enables me to find that elusive ‘off switch’. That has to be a good thing.

One final note. I have called myself a monster and I have related that to my having BPD. But please know that I am not saying that all people with BPD are monsters. Not at all. I am using this word to describe something in myself that I strongly dislike. Something I find monstrous. I do not know enough about BPD and other sufferers to label them as such. I only know about my BPD. Actually, none of those I know who have BPD are people I would describe this way.

“Because humans are complicated beasts, the monster said. How can a queen be both a good witch and a bad witch? How can a prince be a murderer and a saviour? How can an apothecary be evil-tempered but right-thinking? How can a parson be wrong-thinking but good-hearted? How can invisible men make themselves more lonely by being seen?

“I don’t know,” Connor shrugged, exhausted. “Your stories never made any sense to me.”

The answer is that it does not matter what you think, the monster said, because your mind will contradict itself a hundred times each day. You wanted her to go at the same time you were desperate for me to save her. Your mind will believe comforting lies while also knowing the painful truths that make those lies necessary. And your mind will punish you for believing both.”

— Patrick Ness (A Monster Calls)

Thanks for reading

 

Cate

“To Carry The Universe Or Be Crushed By It”

Very timely was the day of posting about peace on 4 November (see my last post Dona Nobis Pacem – 2016). Just four days before the American Elections.  I am a strong advocate of peace, and of peaceful interaction amongst individuals. I simply don’t see any other acceptable way. But I tell you, beyond this desire for peace is a desire for all people to be treated kindly and with compassion. It breaks my heart that this is not happening right now.

I know that my approach to treat all people with kindness and compassion, even my enemies and those intent on harming me, is a little unusual. I know a lot of people don’t understand my thinking. But then I know that I’m not alone in this quest for humanity. It may be that you consider me weird that I have no desire to harm those who might harm me or my loved ones.  I can assure you that people greatly qualified in weirdness have said previously that I am weird. It’s okay with me.

And maybe you think “what does a (white, heterosexual) kiwi from somewhere at the bottom of the Pacific Ocean, thousands of miles from the United States know about anything?” Fair call, except what is happening in the US affects me too. What is happening there affects our whole planet. But perhaps more than anything the US political scene affects me because my American friends are suffering. I hate that. I hate that some of them are in the minority groups targetted by the President-elect.

Over the weekend I learnt a Facebook friend of mine had been told to kill herself by trolls commenting on a post about the Klu Klux Klan’s planned parade in North Carolina. Complete strangers (yes, more than one) telling her to kill herself! I was beyond shocked. I had earlier read it was happening, but when I learnt it affected my friend I admit I was crushed. It literally stopped me in my tracks, and I found it difficult to function for the rest of the day. Firstly, out of concern for my friend but then just pure horror that people treat each other with such disdain.

I kept asking myself, where is the compassion? And you may think that compassion has no place in what is happening in our world. I respectfully disagree, as I have suggested above.

“Compassion hurts. When you feel connected to everything, you also feel responsible for everything. And you cannot turn away. Your destiny is bound with the destinies of others. You must either learn to carry the Universe or be crushed by it. You must grow strong enough to love the world, yet empty enough to sit down at the same table with its worst horrors.” — Andrew Boyd (Daily Afflictions: The Agony of Being Connected to Everything in the Universe)

I admit that I have been swaying between being crushed by what is going on in the world, and by being able to “carry it”. It’s tough for all of us. Especially those people in the US and people targetted by the President-elect. But for a moment, I need to take a slightly different angle to perhaps explain why it is so hard for some of us.

People with Borderline Personality Disorder (BPD) usually have a great deal of trouble with feelings they experience to the extreme. That is, we feel it perhaps more deeply than people without BPD.

Whatever your understanding of this personality disorder, and whatever your experience of people you know who have it, let me say that when there are such terrible things happening around the world, even in our own backyard, we have a very hard time. This can show itself in a variety of different ways, but for me, I have this overwhelming need to express compassion and to want to see other people do that too.

For the life of me, I can not understand this hatred, contempt, and antipathy for fellow mankind. I can not understand wanting to hurt another human being (or animal, for that matter). I even can not understand this desire to strike back at someone who harms, or threatens to harm me. It’s just not me.

I am no better than any other person on this planet, but I simply do not get it. I am sure that my particular BPD (and it is slightly different for all of us) is to blame for my desperate need for compassion to spread. And while it doesn’t, I admit I am crushed by it. It is completely overwhelming.

Last night I started to go through my Twitter feed, something I admit I have put off for a few days. There I came across a list of fifty people who were being targetted by those spreading hatred. These were innocent individuals who had done nothing wrong. They had maybe expressed fear or weakness in a recent tweet and that was now causing them to be targets of this movement to encourage people to kill themselves. I put myself in their shoes, and immediately had a sense of how they must be feeling. Punished for feeling afraid. It is simply wrong.

I can’t tell anyone else how to act, I can only choose for myself how I will be. But please, think about it. Don’t spread fire with fire. Just because another chooses to spread hatred, don’t be pulled down to their level. I am convinced that if I treat each other (including our enemies) with kindness and compassion then I can contribute to what can be a peaceful world.

Don’t get me wrong, though. I will still speak up against what I see as wrong. Always. But I hopefully do it in a way that doesn’t seek to harm anyone. I’m sure this is possible.

“Darkness cannot drive out darkness: only light can do that. Hate cannot drive out hate: only love can do that.”

— Martin Luther King Jr. (A Testament of Hope: The Essential Writings and Speeches)

♦

PS. Last night, after I started to draft this post, a 7.8 Richter scale earthquake struck New Zealand, north of Christchurch where I live. There has been major damage and so far, two people have died but I am happy (and amazed) to say that I slept through the whole thing. I have no idea how that happened.

Thanks to those people who have expressed their concern for me and my family today. I am a little shaky to be back in an active earthquake region. Here in Christchurch, we could definitely do without that.

Wishing those kiwis cleaning up after this, much love, a speedy end to the never-ending aftershocks and a peaceful night’s sleep tonight. Kia kaha (Be Strong).

Thanks for reading!

 

Cate

 

Human 2 Human

Relationships with other humans have to be one of the most difficult and complex aspects of life. They are for me anyway, and there have been a few issues which have reared their ugly head for me in the past few days.

I know that friendships, family connections and intimate relationships are really hard for me and now days I am inclined to pull back from all of them.

With one failed marriage behind me, along with a string of failed relationships, I am alone and pretty certain that I will remain alone. I believe now that I not supposed to have  someone by my side. I have never believed that there is a soul mate for everyone, nor will everyone find their soul mate. Actually,I suspect my soul-mate might just have been and gone.  And sometimes circumstances just get in the way and block the way for what might have been true love.

On the other hand, it was some years ago now that I also came to the conclusion that close friendships were perhaps something I would be best to avoid. You may call it sad but I call it safe. After being let down by a number of friendships, I made a specific decision that friendships I might have been able to rely on were no longer worth it. Yes, I do have friends but not many and I try hard not to rely too much on them. I am inclined probably too much to withdraw rather than depend.

And then there is family. I have been fortunate to date with my family connections. Maybe they didn’t always understand me or my needs, but they did seem to love me. I think they still love me, but their availability  for me to rely on them is perhaps changing.

I know that my Borderline Personality Disorder (BPD) plays a part in how I relate to other humans. I’d like to say it isn’t part of the story. I’d like to say that I have it ‘under control’. But it is part of me, part of my personality if you like, and no matter how many ways I learn to control or even recover, I know that it will always be there.

An article I read highlighted for me some of the issues that float in and out of importance as issues for me with BPD:

“Most patients named gaining control over emotions, mood swings and negative thoughts, followed by reduction of municipality, self-harm and other destructive behavior and improving self-acceptance and self-confidence. However, improving relationships and improvement of social participation, social competence and job situation has been mentioned as important.”

It speaks of the issues important to patients with BPD in the treatment they need. But I use it as it easily highlights in a paragraph issues I deal with when connecting Human 2 Human.

It’s hard. It’s constantly hard, and with those issues at play perhaps it is easier to understand why I choose so often to withdraw.

♦

This week someone important to me said:

“I don’t care…” [about you]

Ouch! Actually, it was more than “ouch”. It was fuck! Under my breath, of course.

The rest of their words no longer mattered. I had heard that they “don’t care” I didn’t matter anymore. They possibly weren’t even aware of having said it, but it was loud and clear. Maybe this person was someone I could no longer rely on (for any number of reasons). Maybe this was connected to my having BPD. Maybe I was too much. Maybe I had misinterpreted what another person might have taken differently. But then maybe it was simply about their issues not connected to me. It hurt anyway.

Do you see why Human 2 Human is hard?

Another relationship came up on my Human 2 Human radar. I know my mother’s Alzheimer’s Disease is not about me, but how I respond to something that is ever-changing is totally about me. I can’t escape this one.

In a conversation with my mother, I discovered that her memory has gone so much that she appears to know nothing of my life beyond my name and that I am her daughter (I am thankful that she still knows this). She also appears to know nothing of her life when I have been a part of it. Of course, I knew that this was coming some day but that day had arrived and it cut deep. My own mother doesn’t know me. Maybe even I don’t exist for my mother anymore.

My father passed on nearly six years ago, and it seems that while my mother sits in front of me, she is in some way gone too. I have heard the expression of grieving for someone who still lives, and that is even harder than it sounds. I feel like the wind has been blown out of me.

My parents have always been very important to me, although I admit that my mother and I have never been close, never even been friends. The tension between us has gone now. Something I can’t totally explain. But maybe she has gone too.

Perhaps my feeling of loss this week connects to my BPD. I know there will be a connection because there always is. It’s just that I have yet to work it out, to be able to put it into words. Meantime it hurts. Both instances I have described here. I need to hide away and lick my wounds.

I want the luxury of time with my therapist again, but I have no therapist anymore.

All I can do is write. I don’t claim to have any answers. Just questions. I hope that what I choose to write and share with you makes even the tiniest ounce of sense. I suspect it will make more sense with others who travel with a Borderline mind.

Thanks for reading

 

Cate

 

Please Don’t Mess With My Meds

WARNING: This post does not contain the hope that might usually be found in my blog. I’m sorry about that, but I have to be real. I hope (yes, really) that ‘normal’ service may resume soon.

It’s pretty simple. Just don’t mess with my meds.

Don’t change anything, don’t add anything, don’t stop anything. That should be simple enough, shouldn’t it?

It’s like a huge cauldron of… smoke. Me.

Yes, smoke ( see the image above). The fire beneath burns red through the hot coals. You might not be able to see the coals, but I can. I can see them and I can feel them. They will burn me in their wake and if you get too close, they will burn you.

But the smoke? It looks innocent enough but will strangle, suffocate and kill you and me both. Even at a distance.

Did you read my last post? If you did you will know that I just experienced lithium toxicity (it’s not an experience I would recommend). That is, too much lithium in my blood.

Beyond what I wrote in that post, I was sent home from hospital to detox. That involved coming off the lithium, cold turkey. The withdrawal wasn’t too bad, perhaps because the symptoms of toxicity were pretty awful and over-rode absolutely anything else.

But that wasn’t the end of this issue. Nearly a month later…

I went back onto lithium and have suffered for the decision. Now, I have had two times when lithium toxicity was thought to be the issue resulting in some major physical symptoms, and a total of four changes in lithium dose.

This week my doctor suspected I was toxic again, but after more blood tests finally concluded (yesterday) that I wasn’t. My levels were simply ‘too high’ and I needed to come off lithium again.

I’m struggling to keep up with this,so I will completely understand if you are too.

The whole time what is most on my mind is my mood. When the doctors are most worried about my medical condition, and getting the lithium out of my kidneys. Yes, I get that is important, but my worry is my mental health. Four changes in dose of any drug for your mental health and you might just be reeling too.

It’s when people start messing with my meds that my mental health is what pays.

And now I’m paying. My mental health seems to be dropping by the day and perhaps the biggest thing addressed in my blog – hope – is nowhere to be seen.

Hope is replaced by irritability on a good day, and sheer raging anger (mostly contained internally) on the other days.

Hope is replaced by a belief that I am now completely alone. Everyone in my life has gone, or so it seems.

Hope is replaced by thoughts (but not plans or actions yet!!!) of self-destruction.

And of course, hope is replaced by paranoia. Somehow I have annoyed everyone in my life, and they hate me, so they have either left me (yes, alone again) or despise me.

Hope is replaced by depression (of the sad and angry type right now – no tears yet)

Hope is replaced by nothing. Void.

About a week ago I have to admit that I came scarily close to keying someone’s car. Yes, that’s right. I was going to take a key and run it down the side of this car, leaving hundreds of dollars of damage in my wake. For at least a moment, I didn’t care.

That’s not me! I have never vandalized anything before in my life, but I was so close to doing it. I didn’t. Somehow I woke myself up from a bad dream and walked away, relieved but more than a little bit shaken.

I have been here before.

Not the vandalism, but the Depression and Borderline Personality Disorder (BPD) taking over my functioning. It is perhaps most likely that the symptoms of these mental illnesses rear their ugly heads when people are messing with my meds (my physical AND pyschotropic).

Across the last 13 years I have tirelessly taken my prescribed medication every day. There wasn’t a day when I didn’t take the medication prescribed simply because I was terrified that if I missed a day, then I would go back to the psychiatric hell that was 1993 to 2003.

I had been told in 2003 that I would have to take two medications (particularly) for the rest of my life. One was lithium. I believed the doctor.

After my experience of (particularly) the last month, and admittedly some other problems I have had with the drug over the 13 years, it has been recommended that I come off lithium permanently.

The only problem I have with this is that the doctors involved seem only interested in my medical well-being. Sure, that is a major issue but my desperate desire not to return to what was the pit of hell for me, is a much greater issue for me. I don’t want to put my life at risk, and that is what it will involve. I know it.

The doctors treating me now didn’t know me when I was in that pit. Perhaps they think I am exaggerating how bad it was. I am terrified in the possibility I could go back.

When people (yes, doctors) mess with my meds, they have to consider ALL the consequences, and they have to be listening to ME. I know myself better than they do.

Of course I know that the worst may not happen if I come off lithium completely, but I have to do my darnedest to protect myself from the possibility. I would be crazy not too.

We would all be crazy to not do this when changes to our health regime are made.

Thanks for reading!

 

Cate

How Borderline Personality Disorder Feels To Me

CAUTION: This post contains issues of self-harm and suicidality, although not in any great detail (but you have been warned).

I have Borderline Personality Disorder (BPD).

That’s no big news for regular readers but if you’re new, it is important that I say this from the outset. I have BPD. That’s the angle that I am coming from.

Many people with BPD choose not to admit to having it, mostly for the simple reason that there is a great deal of stigma attached to the disorder. But that’s not what I want to talk about, although I hope that what I say might be in some small way helpful towards smashing that stigma.

Another reason people with BPD don’t talk about their disorder is that it is a very difficult disorder to talk about. There are many variations (think over 200), and that means that what people feel and experience is going to be different for practically every person who has it.

If there is one thing I have consistently failed at as a writer, it is to describe what BPD feels like for me in a way that satisfied my desire to get it across to others. I have tried many times. I just haven’t managed to describe it as I really feel it. Every time I have written a post about BPD I have finished feeling dissatisfied. I might have got some aspect across, but I didn’t describe how BPD is for me.

While I was diagnosed as having BPD some five years ago, I admit that for as many doctors who have said I had BPD, more said I probably don’t. They said I wasn’t typical of people with BPD. Even more said it wouldn’t be good for me to have that diagnosis (in my mind a strange thinking for diagnosing a health issue). Only those who said I do have BPD were willing to listen and hear that my experience is that BPD matches both my emotions and behaviour.

To me, it wasn’t specifics that spelt BPD but rather an intrinsic way in which I deal with my emotions and my relationships with others. Face it, that’s hard stuff to talk about.

But here are the issues for me (in no particular order).

I  am completely paranoid. I expect that friends/family are about to leave me or say awful things about me. They are constantly (in my mind) one step away from leaving me or hurting me.

You name it, a lightbulb might blow… to an argument with a friend/family member, and I will (over) react by thinking it’s time to kill myself. Yes, it’s time to kill myself because it is an assumption that one day I will commit suicide and people would always be better off without me. It’s just a matter of time! Remember this is thinking rather than actions, although given enough thought and common depressive thought, BPD will drive me in that direction.

I think that the best thing for me is to leave you… before you leave me. It would be best to quit my job just in case my boss is about to sack me. Actually this is exactly what I did in my last job. I thought they were about to sack me, so I quit. Actually I later found out that they had no intention of sacking me and were disappointed when I suddenly left.

While I haven’t self-harmed for about four years, I regularly mull over thoughts of self-harm, particularly if something in my life goes bad. It’s not that I ever got any form of high from my years of self-harming (it was about control), but I just don’t value my body enough to say “no!” to myself. Thankfully it has been four years of fighting the urge rather than actions, but to be honest, it doesn’t get easier.

Self-harm, for me, is not just cutting, etc but also includes substance abuse, extreme dieting, smoking, and excessive exercise. That’s my way of thinking about it and I accept that you may not agree. For me, it is all the negative ways I use to control myself and my body, not to mention exerting pain on myself. Not surprising now that I experience more physical pain through fibromyalgia, I am less likely to think about exerting physical pain, through self harm, on myself.

I constantly think in ‘black or white’. Good or bad. Right or wrong. I can’t for the life of me even comprehend ‘grey’. It would be so much easier if I could. I try, but I am yet to master seeing the whole spectrum.

It is possible for me to have no idea what I feel. Is it happy or sad? Is it hate or love? It is difficult, at times, to know. Maybe I feel both, at the same time. It can be right on the borderline.

My emotions can cause me pain. The great Marsha Linehan says that people with BPD are like emotional third-degree burns victims. Personally I’m not fond of that analogy, but perhaps because I don’t see that my emotions hurt me as much as physical burns victims suffer from their injuries. I hasten to add though that I claim that statement as my own but not for others. I get that for others their emotions cause as much pain as physical pain. I know many people who have BPD who would say Marsha Linehan’s analogy is completely appropriate for them.

I admit, with some reluctance, that I am inclined to think that everything is about me. In a time of extreme unwellness, I thought that 9/11 was about me. I can’t remember my reasoning but it made perfect sense to me at the time. But more commonly I assume that negative events, such as arguments and the like, are my ‘fault’. Interestingly I don’t apply the same logic to positive events. Perhaps I am only interested in destroying my health, happiness or well-being.

I have a tendency to be impulsive. I admit I have shoplifted (ok, so only once). As a child, I regularly stole from my parents. I constantly have to be careful not to engage in compulsive shopping, spending, drinking and thinking. All that said, I have rarely been impulsive in relationships, even if at times, I have failed to think things through as much as I ought

And lastly, because this is one that appeals to me, people with BPD are sometimes prone to, what one author I read called, magical thinking in which they use unrealistic thoughts and beliefs to solve problems in their life (Robert Friedel in Borderline Personality Disorder Demystified, 2004). I admit that I do this (I’m not going to go into detail), although have never before seen it attributed as relating to BPD. My psychiatrist prefers to call it my ‘weirdness’.

Having written all that (and apologies for the length), I think I have gone somewhat closer to describing BPD as it feels to me, but, I am somewhat terrified. Firstly, how are you going to treat me now that you have seen inside? But secondly, I need to remind you that this is me. It is not how it is for others with BPD. Maybe some of it might apply, but just as easily, some of it won’t.

With the distinct possibility that I have not succeeded in what I set out to do with this post, I am including a link to another person’s version of what BPD feels like. I found it very useful and the temptation was to post it simply as it is. But I needed to do the ‘Cate version’, which would only ever be written. I hope you take time to watch. For each person who chooses to tell what BPD feels like to them, I believe more will learn and experience what BPD really is, and maybe one day the stigma against us will reduce.

I have such an unstable sense of self that I fear my post will somehow destroy me and my relationships. Somehow it will confirm what I have suspected to be your earlier suspicions that I am a fake, a fraud and just too much work. I am posting it anyway because I know that writing this has somehow been a good journey for me. As much as I hope you have learnt something, I know that I have learnt. It is good for me to be able to say “this is how it feels to me”.

One last thing I need you to know. You don’t have to try to somehow assure me that I’m not that fake, fraud or whatever. You don’t have to assure me of anything. All I wanted to do is done. I have shared how it is for me.

Thanks for reading

 

Cate

 

Stigma Via Health Professionals

This is my latest post for A Canvas Of The Minds. It was posted yesterday. I apologise for my lateness in sharing.

“Am I alone with this? Have you been on the receiving end of stigma from health professionals, be it general health or mental health?  How have you handled it and what effect has it had on the overall treatment of your health issue? If it isn’t something you have experienced, how would you handle it if you came across such stigma?”

Read on at: Stigma Via Health Professionals

Thanks for reading

Cate

 

 

Lessons I Must Have Missed

Do you ever get the feeling that perhaps you missed some of life’s essential lessons?  Somehow you just weren’t there for that lesson, or maybe you had something distracting you, so you just weren’t paying attention?  I’m not talking about school lessons but rather lessons in the things we needed to know to be able to function adequately as a human being.  Lessons in things that would substantially help us get through life.

I’m coming to the conclusion that I very definitely missed some lessons which could have made life a whole heap easier and maybe even less traumatic for both myself and those close to me.  The missing lessons for me centre around emotions.  I seriously don’t think I ever learnt anything useful until I was very sick and depending on a very good therapist to get me through.  It’s more than a little sad really, and it goes along way to perhaps explaining where my relationship with Borderline Personality Disorder (BPD) came from.

BPD is a hard disorder to get your head around simply because there are so many variations. We are certainly not all the same, as many websites suggest.   There are usually many things going wrong to warrant a diagnosis, but in my mind it all centres around emotions and the ability to express and manage those emotions.

So here are a few of the lessons that I may have missed, and which may have contributed to the existence of BPD in my life.  They may seem a little disjointed, but bear with me.  There is very definitely a pattern.

Lesson Missed #1
It’s okay to feel hurt

Remember that awful little rhyme that has wrecked havoc on the minds of so many girls with curly hair?

There was a little girl
Who had a little curl
Right in the middle of her forehead
When she was good, she was very, very good.
But when she was bad she was horrid.

Who quotes that at their daughters?  Who tells their little daughter that they are horrid?  It’s horrid that anyone should even write such a rhyme let alone quote it at small girls.  And yes, it was quoted at me.  Apparently it was written for me.  My guess is that I was around four or five.

It’s difficult to remember an emotion back that long ago but my guess is that there was no expressed emotion.  I just knew that I was bad. It was a fact, indisputable by the presence of that word ‘horrid’ being applied to me by people I loved and trusted.  Did they think it was funny?  There is nothing funny in name-calling.

If I was that five-year old again, I hope that I would feel hurt, even betrayed.  It seems only appropriate, but then appropriate emotions were something I didn’t know about for a long way to come.

Lesson Missed #2
It’s okay to feel angry

By the time I got to around 15 I was struggling for a number of reasons. Not that anyone outside my immediate family would have known.  To the outside world I was a good teen who seemed to be doing all the right things.  I turned up at school (and anywhere else I was supposed to be), I passed my grades, I had friends, there was nothing I was doing wrong.  But my family knew differently.

I was a bomb waiting to explode but I had little idea of what was going on.  I guess now that I was mostly angry and frustrated but I had no idea how to express that.  I didn’t even recognise what that meant.  I would simply explode and physically lash out.  That was the only means I knew of getting what was inside out.  It would literally be an exploding bomb with no words.  No words because I didn’t have a clue how to attach words to what I was feeling.

Eventually I didn’t trust myself.  I didn’t understand what was happening, so why would I?  Being unable to temper that lashing out I made some big decisions at that point which have significantly impacted the rest of my life.  I was simply doing the only thing I knew how.  I was holding myself in.  Protecting myself, and more importantly, others.  Too scared to express anything.   Only my family know who bore the brunt of that, aside from me.

Lesson Missed #3
Feelings are NOT thoughts

Fast forward to 30.  I’m in residential treatment for a variety of mental illnesses (although not BPD).  Sitting in my therapist’s office, he has asked me how I felt about something that had happened in my life.  I tell him what I think about it.  He asks me again, and this time points out to me that how I feel about something is quite different to what I am thinking about it.

Bingo!  It might seem obvious to you, but at 30 I had no idea.  I was so shut off to my feelings that I didn’t even know they existed.  I literally thought ‘feelings‘ was another word for ‘thoughts‘.  I am an intelligent person.  But I simply hadn’t had that lesson.

That was a very big day of learning.  Life didn’t get easier because now that I was feeling, I felt every one of those emotions eventually.  It hurt like hell, but at least I was on the right road.  There was some hope.

♦

There were more lessons to come.  I was completely closed off to experiencing what I felt.  It seems I had been right from childhood.  Why?

There are lots of possible answers to that ‘why?‘  I’m not going to get into blaming anyone, including myself.  Right now that just wouldn’t be of any help to me or anyone else.  It just was.  What I can do with having worked through this is to understand better where the BPD diagnosis eventually came from, and continue to work from there toward recovery of some sort.  I think too, that some of the other attributes of BPD which I also have perhaps came about as a means to coping.  If I went into that now, this post would become book length.  But maybe it’s time to explore those in future posts.

♦

“Your perspective on life comes from the cage
you were held captive in.”

— Shannon L. Alder

 

What Matters To Me

Some words of wisdom bounced up onto my Twitter feed a few days ago.  Words worth taking notice of.

“Our main question should be “what matters to this person?”, not “what’s the matter with this person?”

– Sir Mason Durie

To put these words in context, Sir Mason Durie is a now retired psychiatrist and professor of Maori Studies in New Zealand.  He is well known for his leading roles in reform and issues of Maori health and Mental Health Services here.  I admit that when he speaks, I listen.  He knows what he is talking about and more importantly he seems to care about his patient.

We all know the experience of being labelled with illnesses, both physical and mental.  Those labels tend to carry with them some assumptions and stigma.  When I go to see a new health professional, regardless of whether it is my physical or mental health that is at question, I go with some trepidation.  Borderline Personality Disorder (BPD) carries with it some terrible assumptions about the person to which the label has been applied.  I tend to go in armed for battle.  I have to convince this person that the assumptions about BPD are not who I am.  Of course, if I go in too ready to fight for my right to be accepted in spite of BPD, I know only too well that I will then be labelled resistant and argumentative.

Sometimes I just can’t win. There are times I go in with resignation on my mind.  It’s going to be too hard to fight and so I just have to accept that because I have BPD this health professional has already jumped to conclusions of who and what I am.  And of course, sometimes I am simply too unwell to fight.

But why should I have to go into a doctor’s office with labels and battles?  How do they really assist the doctor to treat me?  I can accept that it’s convenient to think of me, the patient, in terms of half a dozen (perhaps more if I’m really facing the truth) labels.  It’s quick.  It’s easy.  Labels are faster than sentences of pain expressed.  So I can see from their perspective it might be simpler.  But do those labels really help me to be treated appropriately?  I don’t think so.

The fact that I have BPD does not make me the same as another who has  BPD.  Actually there are over 250 variations of BPD before we start talking about severity and coexisting problems.  The fact that some psychiatrist along the way diagnosed me with BPD, doesn’t tell any doctor anything about how to treat me.  Any doctor can say what is the matter with me but only if they are prepared to listen to me will they know what matters to me.

How BPD affects my life?

What makes it difficult?

And the all important, how they can help me to live a fulfilling life?

I know that a doctor having the time, let alone the inclination, to ask me, to listen to me, is a bit of a sad joke considering the workloads of health professionals.  A doctor listened to me the other day, and because of it, he was running behind on his schedule for the rest of the morning.  He had to choose.  Did he listen and help with what mattered to me?  Or did he keep everyone else on time?  I appreciate that he chose to listen to me, to hear what matters to me, but I accept that probably no one else in his waiting room appreciated their extra wait.

Yet I’m sure there has to be a way that this can work.  If a doctor, or any health professional, approaches me with an attitude of what is important to me, then I have to get better treatment than if my needs and desires are just assumed on the basis of a label.

My labels don’t tell anyone who I am.  They don’t even tell me who I am.  If I use the example of BPD again, reading the list of what makes up a person with BPD will not tell me, or anyone who I am, what my needs are or how best I should be treated. Having BPD says virtually nothing about me, except give a convenient label.

What matters to me is that someone will listen and hear what I have to say.

What matters to me is that I get taken seriously, and not just dismissed as just another patient.

What matters to me is that they care to ask how this illness affects me.

What matters to me is that someone cares enough to find out who I really am.

When I think about it, I have seen dozens of doctors over the years.  I couldn’t count.  But there is only one doctor (a General Practitioner) I can think of who repeatedly took the time to find out what mattered to me.  By doing that, he helped me.  Maybe I wasn’t cured, but maybe I lived.  That’s what mattered to me.

♦

“Seeing modern health care from the other side, I can say that it is clearly not set up for the patient. It is frequently a poor arrangement for doctors as well, but that does not mitigate how little the system accounts for the patient’s best interest. Just when you are at your weakest and least able to make all the phone calls, traverse the maze of insurance, and plead for health-care referrals is that one time when you have to — your life may depend on it.” 

― Ross I. Donaldson, The Lassa Ward: One Man’s Fight Against One of the World’s Deadliest Diseases

I Am Not A Demented Chameleon!

Do you remember back in the playground when the overweight kid got called “fatty”?  And the one who told some fibs was branded “liar”?  There were endless names that children named other children without a care in the world.  We (and yes, I probably was one of them too) didn’t know how hurtful those names could be.  Perhaps half the time we didn’t even know what the words meant.  We had simply heard them from others, and thought we’d give them a try ourselves.  I think it’s where the re-phrased “sticks and stones will break my bones but names will always hurt me” fits.  And yes, those names did hurt.

Today, I and all my friends who have Borderline Personality Disorder (BPD) with me, got called names.  We were called  ‘demented chameleons‘.  Apparently Borderlines (like Sociopaths) they said, are ‘demented chameleons‘.  The original name was tossed at sociopaths (as the site was focussed) and my thoughts about that are another issue   I just got angry when I saw someone throw Borderlines into the fire, calling us the same name, with probably no thought at all.

It’s something that I can walk away from.  I’m used to it.  This type of name-calling happens for people with BPD all the time sadly.  Actually it happens to all people with mental illness all the time.  I can walk away and that’s what I did.  The person who labelled me a ‘demented chameleon‘ probably doesn’t personally know anyone with BPD, and simply read it somewhere on one of the awful websites that set out to degrade us.  It is probably a combination of stupidity and ignorance… and so it deserves my walking way.

The difficulty I am left with though, is that ignorant comments like that get read by others, and believed.  It’s what builds up the stigma against both BPD and mental illness as a whole.  That’s what really gets my blood boiling.  How dare they blast me with their stigma but also contribute to the overall stigma that all of us with mental illnesses face.

This is my idea.  For each time I see such a combination of stupidity and ignorance, I need to post here, my opposing view.  Maybe it might not be the same people that read both accounts, but in my world one can still outweigh the other regardless.  If people choose to feed the world with negative views of me, then I can feed the world with the positive.  Does that mean you are going to be reading posts like this everyday?  No, that’s not my intention.  But when my blood boils, I need to speak out.

People with BPD are not ‘demented chameleons“.  If you stop to get to know someone with BPD you will find that actually we are beautiful people.  We are generally very caring people.  That’s part of our disease.  But we are not demented.  While we may change aspects of ourselves in how we come across to the world. we are not cynically one thing one day and another tomorrow.  Moreover that changing does not happen out of an intent to hurt and manipulative.  It is simply who we are as we battle with the internal struggle to own who we are.  It’s not easy having BPD, and name calling such as this doesn’t help us.

I suspect that most people have no idea about BPD.  The label tends to draw a blank expression on the faces of those who hear it.  BPD is  not well known (like say, Bipolar) and is certainly not well understood.  But I will not sit quietly and see myself and my friends named as ‘demented chameleons‘.  That simply comes from ignorance.

And now having said that, I walk away and breathe.  Frankly, the people who choose to live in such ignorance are missing out on you and me.  Emphasis on the missing.  I almost feel sad for them.

Ending on a lighter note… I have been called a ‘demented chameleon‘ but I’m still waiting for the ‘incorrigible’.

Image credit: Used with permission of Sue Fitzmaurice.
Facebook: Sue Fitzmaurice, Author

PS.  Victory after Publishing.  I’m happy to see that the offending material has now been taken down. 

“You may encounter many defeats, but you must not be defeated. In fact, it may be necessary to encounter the defeats, so you can know who you are, what you can rise from, how you can still come out of it.” 

― Maya Angelou

Play Nicely With The Other Kids

As a child I am sure I was told by my parents on many occasions to ‘play nicely with the other kids‘.  And that’s what I did.  Mostly.  I wasn’t one of the popular kids in the playground, but was one of the next tier down.  The middle of the road kids who were okay.  I had lots of friends, no real enemies except for the one class bully, and even her, I tried to be friends with.  I guess I wanted to be friends with everyone, rightly or wrongly, and pretty much, I achieved that.

It’s not an easy task to get along with everyone, and now to be honest, I wouldn’t be so open.  Now I’m more selective, but as I child I did what I was told to do.  What’s more, at that time as a young girl, I didn’t have a mental illness that contributed to how I ‘got along‘.  Now I do.

You don’t have to look very far on the internet to come across the sites that talk about what awful people those of us with Borderline Personality Disorder (BPD) are.  Those sites, which I’m not going to quote or name, will tell you that Borderline’s are really hard work to have in either your family or circle of friends.  Actually they probably warn you not to have Borderline’s in your circle of friends.  And do what you can to distance them from your family.  They’re simply too much work, and you’re just going to get hurt.  Sites by health professionals are also in abundance telling you that Borderlines are the worst patients you could have, and actually if you are a health professional, those sites would probably just tell you to steer clear of us Borderlines.

Those sites are ones that I purposely avoid, as they simply contribute to the large amount of stigma that exists toward Borderlines.  And actually, that is not what we need.  Apparently we have low emotional intelligence.  We are also impulsive and  aggressive.  We act like children and we are very sensitive to rejection.  Basically we are too hard work, and as a non-Borderline you would probably best to run a mile (or 100 miles) from us.

I’ve been aware of those attitudes to Borderlines for a long time, but have wondered how much of that I am seen to fit with.  I know BPD is a difficult illness to live with (for the person who has it!) but I’m not convinced there is the need for such strong feeling towards us.

I know that I don’t fit the classic mold of a Borderline.  My psychiatrist would go as far as saying that possibly I don’t have BPD.  I can’t afford to keep visiting psychiatrists until I get a definite answer, but so far BPD does seem to fit for me.

But while I played with everyone in the playground, and in my early adulthood was referred to as being a ‘people person’ who got on with anyone (and I mean anyone!),  now I start to wonder.  I’m too much of a recluse for a ‘people person’ anymore. I prefer my own company, and my own world.  I am an introvert naturally, but more and more I prefer being alone.  There are lots of reasons for that, and I admit that one is to do with repeatedly being let down by other people.

The people around me in my life actually don’t seem to want to be near me.  I’m not feeling sorry for myself, or having a pity party.  I just don’t get on with people as well as I did.  And those in my life seem more interested in distancing themselves from me.  We just don’t fit anymore.

Earlier this year I was victim of some lies told about me.  It was a situation where there was very little I could do about it.  I simply had to let it be, and hope that people worked out the truth in time.  I became quite paranoid, mostly because I didn’t know who had been told the lies.  I became very wary of people.  Another reason to withdraw, and I admit I found it hard not to do so.

I continue to be wary of people.  It’s hard to know who I can trust, and it’s hard to know who would choose to be on my side.  Would they bat for my team?  Somehow life has changed so that the people I thought would bat for my team, I suspect won’t anymore. And that is rather sad to find that those I thought would always be there have different lives and lifestyles from me, and we just no longer fit.  Time changes.  And time has changed me.  I choose to be alone, so much more than I did.  My own world knows my name, and I can be content there.  Can’t I?

Has BPD changed me?  Have the events in my life changed me?  Maybe it is the other people themselves that have changed, but then it’s always easier to blame the psych patient, isn’t it?  I don’t mean to accuse anyone of anything in this post, but rather I simply see that there has been a radical shift in my life.  I’m actually okay with the solitude I have now, but I do wonder what happened to the little girl in the playground who was friends with everyone.

♦

“I live in that solitude which is painful in youth, but delicious in the years of maturity.” 

― Albert Einstein