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

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

There Will Be No Sorrow

This past weekend (it’s Sunday here in NZ) has been really difficult for me. There have been a lot of tears and a lot of swearing, from one who doesn’t generally swear much.  I think it would be reasonable to say I am entitled to do some mud-slinging on account of what another person has put me through lately.  I’m not going to.

[So that you're not completely in the dark, a number of you follow my ex-boyfriend's blog and yesterday he posted some rather startling (well, to me anyway) news on his blog.  That, combined with some other matters I can't go into, led to a great deal of upset for me.]

What does mud-slinging really achieve though?  Nothing really.  Maybe a brief moment of satisfaction, but not enough to make it worth it.  I’m not really a mud-slinging type either.  I might feel it inside and maybe sometimes it would be better expressed.  But only when it is expressed safely, for both me and anyone who might be in the way.

One of the difficulties I have faced is that I haven’t been treated with that all important kindness and compassion.  Should I say the kindness and compassion which is crucial to me in how I relate to others.  Mud-slinging would not meet my criteria of kindness and compassion, so that even though it might seem justified, I’m not going there.

I’m hurt, but I can find peace for myself eventually simply in the way I choose to react.  So one step at a time, I’m going to patch up my wounds and move on.  No, it’s not that easy.  I’m human too.  But it is my choice.

Interestingly (and painfully) while all this was happening yesterday I had another painful exchange with a family member who told me that my teenage behaviour some 30+ years ago had scarred their life ever since.  I was already feeling pretty overloaded with emotion, although this person was not aware of what else was going on for me.

To be fair I was probably the worst behaved of the three teenagers in the family, but I wasn’t a ‘bad kid’.  There was nothing extreme.  I was just me and was probably starting to show my Borderline Personality Disorder (BPD) tendencies, which wouldn’t be diagnosed for another 25+ years.  I was simply a little difficult to communicate with unless I felt totally accepted by the person communicating.

30 plus years on and I have been told what I always suspected.  The way this person is today is apparently my fault.  Luckily this is something that I had already been through in therapy (because I suspected the person felt that way), so I was able to distance myself from this blame.  I am not responsible for the actions of another person, even if I was a slightly difficult teen.  And let’s be real.  That was so long ago.

This all relates to the other things happening in my life this week, where I have been blamed for another’s behaviour/actions.  It’s interesting how we can so easily blame another for our behaviours, and while this would have crippled me in the past, I’m not letting it.

I’ll be straight with you, and I apologise to those who find it difficult reading.  A few weeks back I spoke in Flawed… Or Perfectly Formed about how chronic suicidal thoughts tend to crop up for me anytime anything goes bad.  So yes, this past week I have struggled to see any hope and thoughts of suicide came up and hit me square in the face.  Yes, for a bit it seemed like the best option right now and I was scared of the track I appeared to be heading on.  I wanted my Dad because we had a type of password agreement between us in which if I couldn’t find any other words to say how I was, I could indicate just how bad things were by this means.  Dad, of course is no longer here, having died over two years ago.  And there was no one to reach out to in this manner.

What eventually shifted my thoughts was the number of readers who follow my blog who have lost a family member to suicide.  Those readers helped me (without knowing it) to shift my thinking away from destruction.  Their pain (from where I’m sitting) managed to shift the block for me.

I go on.  I move on from the hurt of this week.  There are some wounds that need healing but for that little girl (L) who is like my guardian angel ( see Disappointed In Me) , I keep on going one step at a time.  Thank you to my dear friends who have also helped me to do that just by being there (often across cyber space).

My friend Ruby, shared this music link with me after I included another version of the song some time back.  I’m sharing it today because the wording is slightly different from most Beatles versions.  This one includes the words ‘there will be no sorrow‘.  I’m not sure what The Beatles meant by this slight change but I like to think that when we learn to always treat people with kindness and compassion, that ‘there will be no more sorrow‘.  This is my hope.  Thanks Ruby.

You cannot do a kindness too soon, for you never know how soon it will be too late.” 

― Ralph Waldo Emerson

Being Compassionate To Myself

Ted 002

These are my ‘Dorothy’ shoes, named by my friend Elizabeth.  I don’t do sparkly, diamantes and fairy dust, and so these are probably as close as I am going to go to ‘Dorothy’ shoes.  If you don’t know what I’m talking about, go spend a few hours watching the Wizard of Oz, and keep an eye out for Dorothy’s shoes.

This picture was my Facebook profile picture for a long time, partly for the reason that by seeing the picture I was reminded to imagine myself walking in the shoes of the person I was talking to on Facebook.  That was in my days of my primary activity on Facebook being support groups.

After all, that’s what we’re told to do, isn’t it?  Walk a mile in a man’s shoes before you judge him.  It’s a pretty good philosophy in my mind because it reminds us not to judge another until we know what their life involves.  It allows us to go some way towards offering empathy, something we all want and hopefully are prepared to give.

Empathy, according to the Merriam-Webster Dictionary, is:

the action of understanding, being aware of, being sensitive to, and vicariously experiencing the feelings, thoughts, and experience of another of either the past or present without having the feelings, thoughts, and experience fully communicated in an objectively explicit manner; also : the capacity for this

In the mental and physical pain that many of us carry each day, what we want is for someone to say “I get how it is for you.”  What strikes me is that while we’re on a never-ending quest for understanding, would it ever be enough for us?  I’m not sure.  I’m not convinced that anyone, unless they know me exceptionally well (and there’s very few in that class), can really know ‘how it is for me‘.

I don’t mean for that to be as depressing as it may sound.

Even if you walk a mile in my shoes, that does not mean that you are going to understand who I am.  After all you need to be me in my shoes, for you to understand me.  If you just walk in my shoes, you may have a completely different experience of me.

When I was first diagnosed with fibromyalgia I joined, signed up or ‘liked’ many websites and pages relating to living with fibromyalgia.  I thought I would be understood.  I thought I would meet people with the same experience.  I didn’t.  I thought it would make my experience of fibro better.  It didn’t.  If anything I felt more isolated partly because even these people didn’t seem to ‘get it‘ for me.

I don’t mean to offend anybody because those sites are all offering good information and support, but actually I didn’t feel understood, I didn’t feel I was with like-minded, and like-suffering people and all that happened was that I felt pretty isolated and depressed.  I pulled back, fast.

One thing I did find before I left was a whole lot of posts available for members to share with their friends and family, like this one:

It’s crying out for empathy, but it’s not the way I’d go about it if I was looking for empathy, and I doubt it would be that effective.  Personally I see these types of posts and I groan inside.  Maybe I shouldn’t, but then I’m human.  Maybe I’m allowed to say this because I have fibro (then again, maybe I shouldn’t) but while fibro is a hellish existence which I don’t enjoy, this description of it does not capture fibro for me.  This is begging for attention!  And who likes people who do that?  I would never share this with my friends and family.  Then again, I accept that it could well be the very real experience of the author.  We are all different.

I’ll take another subject I know only too well.  Borderline Personality Disorder (BPD).  People with BPD suffer immensely and the quote above, with a few minor alterations, could be used for us.  But why stop there?  Bipolar, Schizophrenia, Dissociative Identity Disorder, to name a few?  Which mental illness does not include great suffering, and leave sufferers feeling like they are imprisoned?  And who doesn’t want the understanding?  Chronic physical illnesses of all types are also the same.

My point is this.  We can cry out for empathy in these ways.  We can beg people to understand us.  But they never can fully understand what we’re experiencing, because they’re not us.  They can only understand to a limit and then we have to live with our own understanding beyond that.

I don’t have people in my life who fully understand what I am suffering both in mental, or physical terms.  A few have some idea, but then I have to remember that just because they might know someone else with BPD, doesn’t mean they understand my reality of BPD.  Like most disorders there are many variances which make reality different between individuals.

But you know what?  I’ve decided that it doesn’t matter if they don’t get my suffering.  That’s not what I need from my friends and family.  Yes, it would be lovely if people understood exactly what my needs are, but I’m being unrealistic.  What I need is absolute acceptance of who I am, as I am.  If they can give me that, then I can put that with my own compassion toward myself.

I believe that I would be more effective in getting my needs met if I didn’t push my demands for understanding on other people so much, but started practising self-compassion, in order that my needs be met.

I need to focus on what I can do to meet my own needs.  It doesn’t make me a hermit, it just makes me aware of what I need, and find ways to meet those needs… without having to go begging for everyone to understand me.  I also think  if I can love myself and take care of my own needs without begging for friends to ‘get‘ me, then I also become more attractive as a friend to others.  And that leads to more of my needs being met.

Is that confusing?  It would be quite remarkable if we all had friends and family who understood our suffering, but it’s not going to happen.  These are human beings we’re talking about.  If I can appreciate and accept my own suffering, identify for myself what my needs are, and be compassionate towards myself?  Then I am starting to make progress.

One final thought.  Think about the dog or cat who gives you unconditional love.  They don’t understand your suffering.  They just love you anyway.  And isn’t that enough?

“If you celebrate your differentness, the world will, too. It believes exactly what you tell it—through the words you use to describe yourself, the actions you take to care for yourself, and the choices you make to express yourself. Tell the world you are one-of-a-kind creation who came here to experience wonder and spread joy. Expect to be accommodated.” 

― Victoria Moran, Lit From Within: Tending Your Soul For Lifelong Beauty

On Being A Little ‘Weird’

This weekend, I have been staying out at my brother’s farm, looking after the animals while the family are away for a few days.  I have had a wonderful time, in spite of the wet, windy and sometimes snowy, storm all weekend.  It’s been really nice to be with some animals again, particularly the family dog (Duncan, of MEET DUNCAN… A BLACK DOG notoriety) and two cats (Harry and Sally).

Since posting  Real a few days back, it has been running through my mind how readers might have reacted to that post, or what impressions you gained of me.  It made me stop and think for a bit.

The cats I am staying with at the moment are both quite different in character.  Apart from the fact that they both physically are domestic, short-haired cats that’s about where the similarities end.

Harry is my nephew, J’s cat.  He’s about three years old and really just does his own thing.  He’s not in the house much, and is mostly off around the farm hunting a collection of mice, rats, rabbits and anything else he can find.  Actually he’s quite useful in this respect, and seems quite fearsome.  He will tackle rodents bigger than him, if he has the chance.  (I just don’t need to see rodents that size, thank you)

Sally, on the other hand, belongs to the whole family.  From memory she is about 10 years old.  She hangs around the house, doing very little.  Usually lying asleep under the coffee table.  Although on first sight you might think that Harry is the dominate one, actually Sally is.  And don’t the other pets know it?

It made me think that we’re all different too.  I don’t like using the word ‘crazy’ because of its overuse in building stigma, but we all are a little bit crazy.  And in mind opinion, that is a very good thing.  We also all hide parts of ourselves from the world, even those close to us, but those parts are still important in making up who we are.

I told you in Real that I talk to my teddy bear.  This is n0t a sign of Dissociative Identity Disorder (DID), Schizophrenia or some type of psychosis.  It’s just a part of me that I developed from a very young age, as a way to cope with the reality of the world around me.

Each of us does this.  Maybe someone develops an addiction.  Maybe it’s a friendship with a pet.  Maybe it’s as an expression through music or art.  Or maybe something I haven’t yet thought of.  Each of these (maybe some good, some not so healthy) become a way to help us cope with the world.  I believe that for people with mental illnesses, this becomes much more important as we try to live through the realities of trauma, horror and pain.  Whatever we individually do, is simply a means to get us through life.  A coping mechanism.

This is exactly what was described in something I quoted in my last post:

 “Because,” explained Mary Rommely simply, “the child must have a valuable thing which is called imagination. The child must have a secret world in which live things that never were. It is necessary that she believe. She must start out by believing in things not of this world. Then when the world becomes too ugly for living in, the child can reach back and live in her imagination. I, myself, even in this day and at my age, have great need of recalling the miraculous lives of the Saints and the great miracles that have come to pass on earth. Only by having these things in my mind can I live beyond what I have to live for.”  

― Betty Smith, A Tree Grows in Brooklyn

As you can probably imagine I have had numerous psychiatrists want to diagnose a range of disorders over the years.  Now I’ve learnt not to share this part of my life with mental health professionals because they just don’t get it.  But that’s a matter of their failure to look beyond diagnoses.  Immediately they see something a little different, they are out with their copy of the  DSM-V.

Actually on all the occasions I was prescribed, and then given Electroconvulsive Treatment (ECT), an element of the reasons it was being given was because they wanted to “fix me” of this imaginary relationship.  I didn’t always know this at the time, but it’s something I discovered in reading back through hospital notes in more recent years.  Something that didn’t impress me much.

Thankfully, the last psychiatrist I dared to expose this part of my life to, came to a conclusion that actually I was “a little weird’ (his exact words) but he couldn’t see any harm in something that had obviously helped me through a lot of my life.  My therapist (with whom I have recently finished) concluded the same thing.  Although he didn’t call me weird.  He said that what I had done made perfect sense.

And then (finally) I was today reading a fellow blogger’s post about his Borderline Personality Disorder (BPD).  Something he said clicked for me.  It made perfect sense, and it is something I want to explore in time. He said this about living with BPD, as a quote of an source known to him:

 “I feel like a child trying to live

in an adult world

That’s just how I feel.  Not always.  Sometimes I can feel like I’m acting the adult, but mostly I feel like a child in a room full of adults.  It explains a bit about Ted, and why Real doesn’t seem at all strange to me.  It just is.

“I believe that imagination is stronger than knowledge. That myth is more potent than history. That dreams are more powerful than facts. That hope always triumphs over experience. That laughter is the only cure for grief. And I believe that love is stronger than death.” 

― Robert Fulghum, All I Really Need to Know I Learned in Kindergarten

It’s Not All About Me

Recently I had cause to want to say something to someone, who like me, has Borderline Personality Disorder (BPD), or the new name Emotionally Unstable Personality Disorder (EUPD).  I wanted to say to her “It’s not all about you.” I could see her doing, what we with BPD always run the risk of, in taking a situation that wasn’t anything to do with her, and making it all about her.  I quickly came to the conclusion that it was best to keep my thought to myself this time, as otherwise it would have indeed, become all about her.

I should say that I know us well, and so if you have BPD and are thinking that I’m talking about you…  I’m not.  You know that song “you’re so vain, I bet you think this song is about you“?  It’s true.  This is nothing about you.

That said, all of us with BPD will know our tendency to think that the world revolves around us.  Whatever is said, must be about us. Whatever is said, must be confirmation that we have just been, or about to be, abandoned.  Whatever is said, must be an indication that the speaker doesn’t like us.  We use it to feel rejected, hurt and abandoned.  Every time.

The problem with it is that not only do we take the wrong message from what has been said, but we also run the risk of making that rejection happen.  People get tired of us taking things the wrong way.  They get tired of us making what has been said, all about us, when really it has nothing to do with us.  The ultimate is that we end up abandoned, as we feared, because of out own actions.

This is something I know about, because I have been doing it for years.  I could have gone on doing it too.  I could just say “it’s just my BPD that makes me do that“.  I might not be popular for saying it but BPD can be used as an excuse way to easily.  For me, I know my BPD makes it likely that I will interpret situations/conversations to be all about me, but I’m trying to make it different.

I’m trying to say “hang on a minute, this is not all about me.”  Actually, it’s probably got nothing to do with me and I would be a much better friend to myself and those around me, if I could distance myself from the automatic reflex of ‘it’s all about me‘.

I know what I am suggesting is not easy.  Actually it’s really hard to un-do a lifetime of reacting this way.  But I realise that while BPD is part of my personality, I don’t have to let it rule my life.  I don’t have to let that reflex kick in.  It is possible to do things differently… if I try.

BPD isn’t something that can be cured.  We know this, but I don’t believe I have to be permanently disabled by it either.  I can teach myself to react differently.  I can tell myself “hang on, this isn’t about me, how about I react differently?

Maybe you have BPD, and disagree.  That’s okay.  I know that this is really difficult to do, and maybe you’re not in a space to be able to try.  This is just something that I have been trying for myself, for about six months now, and while no one else might be able to see a difference (and that’s okay), I know that for me, there is a huge difference to how I react to the things that happen around me.

I admit it’s still not an automatic thing for me.  I think it takes time to make things automatic, and maybe even the existence of my BPD will mean it’s never automatic.  But I’m not going to let that stop me.  I know that if I am to have a good life and healthy relationships I had to make a change.

It’s about self-talk.  There are no miracles and each time I see or hear something I consciously have to say to myself ‘it’s not all about me‘.

It’s hard, and it won’t happen for me unless I make the conscious decision to do things differently. When the person I referred to above tried to make a conversation all about her, I too (and I know that sounds crazy) had to then tell myself that her response was ‘not all about me’.  It ran the risk of snowballing for me, but this time I was able to stop myself and remind myself to do it differently.

Now, a reminder for readers who have BPD.  What I have written is ‘not all about you’.  What you choose to do with this information is your choice.  I have not written this about you, or even for you.  How do I know that?  Because this written ‘all about me’.

And if you don’t have BPD?  Believe me, that this is a big issue for us.  We struggle with it in every connection we have.  It’s disabling to the point that it prevents us communicating with others.  But I’m not willing to let it disable me anymore.  If I want to have healthy relationships then I have to find a way to beat this aspect of my personality.

“It is tempting, if the only tool you have is a hammer, to treat everything as if it were a nail.” 

―    Abraham Maslow

Invisibility

I started this post a while back now and like many things at the moment, I just never finished. The good thing about that is that it has given me time to think and reflect. What’s really going on here?

I have got the distinct feeling that I am invisible.  I could have got a role in Harry Potter or similar, because somehow it seems that while I think I’m there in reality, I’m not there at all.  I am invisible to all those around me.

A visit to my doctor (my GP) was the start of all this a couple of weeks ago.  He was seemingly uninterested in my reality.  While I talked of having trouble getting to sleep because of pain, all he was interested in was that I was apparently using too many sleeping medications.  I wondered why he couldn’t take interest in my pain.  I wanted him to ask about the type of pain I was experiencing, and how bad it was for me.  In over a year of having a chronic pain condition he hasn’t once asked me to describe my pain.  That seems odd to me.  Maybe he could suggest some ways of managing it.  But as usual, there was no apparent interest.  I guess his bigger interest was getting me out of his office so he could move onto the next person.  So I left, invisible…

My mother has been in hospital over the past couple of weeks, and somehow I have turned into her next of kin.  The night of her operation the hospital staff rang me to ask if I would come into her during the night if she continued to be confused (a side effects of her anaesthetic).  I felt I had little option but to say yes.

Actually I find going out at night difficult.  I guess you could say I am a little ‘scared’ of the dark, so the idea of driving across town in the middle of the night was daunting.  It also meant that I would have to go without my night-time medication, because I would never to drive.  That was all okay except that no one was actually interested in how I felt, and how I would cope if I had to do this.  Invisible again, this time in favour of my mother’s needs and the hospital’s needs.

As the week went on, there were more and more demands on me.  And that’s okay, because my mother was not well and needed my support.  I guess it just felt like it would be nice if my needs mattered somehow, somewhere.  Instead I was just a daughter, serving a purpose.

At the same time as this, I have been reading a very good book about Borderline Personality Disorder (BPD) called The Buddha and the Borderline by Kiera Van Gelder.  One of the things I have picked up in reading this book is the Borderline’s tendency to all too easily feel abandoned.  The lack of a stable sense of self see us take all these things as a kind of rejection of us.

When those I am in relationship with have other priorities, or simply can not be there when I need them, I think that I have lost that relationship.  They have abandoned me.  And so when I am not the priority in my mother’s care, I also feel like no one cares about my needs.

I can choose to go down the track of believing that I am invisible and that no one is there for me.  I can choose to believe that the relationship is gone, simply because I can’t always come first.

Or, I can recognise this as Borderline thinking.  I can tell myself it’s not necessary to think my world has ended because I feel invisible.  Even as I write this I can see that is an extremist view, as well as one that will destroy me if I let it.

I am not invisible.  Sometimes I might need to remember my own needs so that they don’t get lost in other’s needs, but it doesn’t mean that my needs are not important.

If that sounds easy, it’s not.  Especially for a Borderline.  We are constantly trying to hold onto a shaky sense of self, and we have to work hard to see ourselves, rather than believe we are invisible.  Even if others don’t have the ability to give my needs priority, I can work on doing that for myself.

It doesn’t mean I get walked on, or ignored.  It’s just that I recognise that it’s okay for me to put my needs first, even if other’s don’t, or can’t.  A Borderline is likely to tell you that they can’t do that, but I am one who is determined to find a way.  I’m not going to give into my Borderline insecurities.  It might be the natural response for me, but it doesn’t have to be the way.

I remember in psychology lectures at University, object permanence was discussed.  At a certain stage of human development we learn that even though we can’t see something, doesn’t mean it no longer exists.  It’s something that I need to remember in my relationships with others.

Even if they can’t, or won’t be there for me, doesn’t mean they don’t still love me, or care for my needs.  Maybe just for now, I need to take care of my own needs.

“When you stop expecting people to be perfect, you can like them for who they are.” 

―    Donald Miller,    A Million Miles in a Thousand Years: What
I Learned While Editing My Life

Pure BPD

Who I am changes like the wind. Sometimes I’m nice, and sometimes I’m not. That must have started right from childhood because it seemed my mother’s favourite rhyme to quote to me, from a very young age was:

There was a little girl,

Who had a little curl,

Right in the middle of her forehead.

When she was good,

She was very good indeed,

But when she was bad she was horrid.

'Good' and 'horrid'... all in one

‘Good’ and ‘horrid’… all in one

It seems that Henry Wadsworth Longfellow had written it with me in mind, even though he wrote it a good 100 years before my parents even thought of me.  It was always made to seem like it was an appropriate rhyme for me because I had curly hair, but I knew better.  And so did my mother.  I knew my mother was saying that sometimes I could be nice, but other times I was horrid.  There, it’s said.

I knew I was marked for life, even at the age of around five.  Although it would be around another 40 years before anyone could give me an explanation of just why I was like that.  Why was it that I was at least two people?

I’m not suggesting I have Dissociative Identity Disorder (DID).  I don’t, although it was something psychiatrists wondered about it for a while (for reasons other than this, that I promise one day I will find the courage to talk about).

There have simply been several versions of me.  A nice Cate and a bitchy Cate.  If you don’t know me well, and I like what I see of you, you have probably only ever seen nice Cate…  because I know how to behave nicely when that is required.  That said, it’s not something that I consciously choose which I will be.  Sometimes I don’t know until I open by mouth… and see what comes out. Unfortunately that can sometimes be vicious, even though it is still coming from me.  Interestingly it is usually those I love (or hate) who bear the brunt of this.

I have written about this previously in (At Least) 67 Seasons In One Day, and is something that people with Borderline Personality Disorder (BPD) do often.  While sometimes I am embarrassed by my inability to stay ‘nice’, I also like being both people.

“I’m scared that the ‘bad bitch’ me is gonna stay permanently, she, is the only me that doesn’t give a fuck, and that’s wonderful.”

Actually, that’s me.  To be honest, those aren’t my words.  I borrowed them from another woman with BPD because they just fit so well.  There’s the dichotomy of feelings.  I am scared of being the bad one, but I also love it.  That is pure BPD.

I guess the issue is, what do I do about it?  Do I need to do anything about it?

My therapist reminds me that these are just different parts of me, and I shouldn’t try to squash either.  There is a place in this world for both apparently.  But then if that is truly so, why was I being labelled as horrid as a young child?

To borrow the words of a friend, this bitchy Cate is a “petulant child act”.  Sometimes I love her rebelliousness, but other times I am embarrassed by her attitudes and behaviour.  Can she be tamed perhaps?  I don’t know.  She hasn’t been yet.  She continues to be a good, little minister’s daughter who needs to stamp her foot occasionally.  And that’s all it is usually, it’s just sometimes I feel sorry for the people who strike her repeatedly.  Worse still the people who strike her regularly but see me being a totally different person to others at the same time.

Does that make sense?  I know that those who have BPD will understand this splitting that goes on.  I think we all do it in different ways, some more dramatic than others.  Perhaps that’s why some have unpleasantly labelled us as ‘drama queens’.  Perhaps also, is why the DSM-V will label us differently.  Instead of BPD we will have Emotionally Unstable Personality Disorder (EUPD).  Maybe it’s accurate but I’m not impressed.

“Look at children.  Of course they may quarrel, but generally speaking they do not harbor ill feelings as much or as long as adults do.  Most adults have the advantage of education over children, but what is the use of an education if they show a big smile while hiding negative feelings deep inside?  Children don’t usually act in such a manner.  If they feel angry with someone, they express it, and then it is finished.  They can still play with that person the following day.” 

―    Dalai Lama XIV

Is There a Sign On My Back?

I am seriously wondering if someone (who doesn’t like me) has, unknown to me, stuck a sign on my back saying “pick on me” this week.  Mysteriously, each time I change my clothes, I still seem to have the sign plastered there for all to see.  Having spent time with my brother this morning, I sent him a text a few hours ago to ask whether he noticed the sign.  So far he hasn’t responded.  I’m not exactly sure what conclusion I should draw from that.

Some weeks seem just determined to make things hard, and this week has  achieved that for me in so many ways.  I thought bad things were meant to happen in three’s, but so far I’ve counted six.  Here’s a run down (and I promise it’s the short version):

1.  My trial to come off lithium failed (as I told you in Ten Years Later, And I Have My Answer).  You’ll be pleased to know that I am back on the original dose.  Just waiting for it to kick in.

Actually the day after my psychiatrist told me to start the lithium again immediately, my GP (General Practitioner who handles day to day medical issues) objected, and wanted me to wait another week “just to be sure”.  Basically I quoted my last post at him and explained why waiting wouldn’t be a good idea…  and then I ignored him.  Meanwhile as I wait for the lithium to kick back in, I have all the usual symptoms of depression.  It’s a few years since I was last depressed.  I hate that it is back.

2.  The implication of my inability to get off lithium now means that I can not get medication to treat my fibromyalgia (the whole point in trying to come off).

3.  A further implication of my inability to get off lithium is that I can not get adequate pain medication for fibro symptoms that can not be treated.  All I can use is paracetemol (an over-the counter analgesic) and a very limited amount of codeine.  Neither of these do anything for the worst problem, which is nerve pain.

4.  An implication of my inability to get adequate pain medication takes a blow at my intention to use  extra medication so that I could deal with the extra pain caused when I try to giving up smoking again.  (See  Unseen).  Actually my GP denied any knowledge of this issue, and had no willingness to hear me on the issue of pain caused my nicotine withdrawal.  He basically told me to “toughen up and try again“.  I can’t say I was too impressed by his lack of compassion, empathy and helpfulness.

5.  Totally unrelated to  numbers one to four, I saw my endocrinologist yesterday for a routine check-up for my auto-immune condition Graves’ Disease.  This has been in remission for about 10 months now, and I half hoped that he would discharge me from his care and send me on my way (on the understanding that the disease could come out of remission at any time.).  What he told me instead is that it looks very likely that the disease is coming out of remission.  It’s a wait and see game now.  More blood tests in a couple of months to draw a definite conclusion, and a reminder of what to do if acute symptoms return in the meantime..

Grave’s affects a number of areas in the body, but the biggest impact is on the thyroid gland (producing a pretty serious condition  called thyrotoxicosis), the eyes ( I won’t tell you what it does to the eyes simply because the thought of it turns my stomach), and speeding up the heart rate beyond healthy.  It’s not a pleasant condition to have, nor is the treatment particularly appealing for this ‘nuclear-free’ kiwi.  More about that if, and when it happens.

6.  Just when I get to Friday and really think I’ve had enough… today the Pain Management Clinic, a public health service designed to help me find alternatives for pain management has refused to see me.  Apparently I am simply not a priority, to the extent that they haven’t even put me on a waiting list.  Being unable to get off lithium, this referral was essential, but it seems it’s not to be.

So what do you think?  Is it reasonable to conclude that sign is on my back?  Are my stars just not aligned this week?  Is it one of those weeks when I should never have got out of bed? Hmm.

Image credit: farm4.flickr.com/3140/3103360425

What do I choose?

Despair or Hope?

I’ve been struggling to do much reading this week, finding it too difficult to concentrate even on a short blog post.  I manage the first couple of paragraphs and then drift off.  It’s a symptom of depression.  One thing that I did manage to read, made me stop and think.  Hope Is A Choice.  Actually, if you’ve got the time, and the concentration, there is a lot written on this premise.  I’m inclined to think it’s true, that for me hope is a choice.

Hope is an easy word to say, and I know I use it a lot in my writing, but actually it’s pretty hard to practise, especially when times are tough, and there is a ‘pick on me’ badge on my back.  Actually there had been a fair amount of despair going on here in the last few days.  All these health (including my mental health) issues I’m dealing with are chronic, with little to no hope for complete recovery.

When I said in my last post that I had proven to myself that lithium kept me out of prison and out of a grave, I wasn’t kidding.  That’s the reality, especially if I choose to go down the road of despair.

One of the extra difficulties I’ve faced this week is what Borderline Personality Disorder (BPD) adds to this scenario.   BPD enables me to split too easily between my emotions.  What that means is that one minute I can be happy and full of hope, sure that all this will work out.  But shortly after I can be completely depressed, despairing, withdrawn and without hope.

Actually it is this reason that has stopped me from posting this week.  If I post when I’m feeling good, you will get one impression which might be quite different from what reality is.  That has consequences for you, as the reader, trying to understand but it also has a habit of kicking back at me.  It’s hard to explain but I’m sure fellow BPD sufferers know the issue well.

What I really need to say is that this week has been really hard, and it’s not over yet.  I have some practical issues that I am going to have to try to resolve, but as yet I don’t know how I will do that, and frankly it doesn’t seem like I have a lot of support from the medical fraternity.

Sometimes this week, I have seen very little hope.  Other times,  I have had to go back to borrowing hope (see Borrowed Hope).  I felt disappointed to have to do that, but it was necessary because I had lost sight of my own hope.

As for now?  Deep inside I have a sense that this will work out, that my health can be revived and that hope does exist for me.  Although I’m not sure how it will look.  Sometimes I have to look a long way to find that sense of hope and in the meantime I guess I’m suspending judgement.  I’m not choosing despair.  No matter how bad I feel, I refuse to go back down that road again.  I can’t afford to do that to myself.

“to love life, to love it even
when you have no stomach for it
and everything you’ve held dear
crumbles like burnt paper in your hands,
your throat filled with the silt of it.
When grief sits with you, its tropical heat
thickening the air, heavy as water
more fit for gills than lungs;
when grief weights you like your own flesh
only more of it, an obesity of grief,
you think, How can a body withstand this?
Then you hold life like a face
between your palms, a plain face,
no charming smile, no violet eyes,
and you say, yes, I will take you
I will love you, again.” 

―    Ellen Bass