Friends, Family & Carers Forum

[Viv]

Hi Rockpool,

My knowledge, understanding and experience with BPD is born out of:

1) a lifetime growing up in a BPD family;

2) my experience as a member, then moderator, then staff member of an international forum for carers of people with BPD for a few years. In this time I learnt from reading: books, research papers, articles and the others on the website;

3) more recently I have taken this knowledge, understanding and experience to involvement within the world of BPD here in Victoria.

When you want to know about BPD, it helps to know what you want to know, what is the question you want answered. If you know that, then I can direct you to a resource that can give you an answer. If you are a person with BPD you information needs are probably different from a family member of someone with BPD or someone who works with BPD. The subject of BPD is complex and multifaceted.

I hope this is helpful. 

[Appleblossom]

@VivI liked your post. I am just reflecting broadly. I am long in the tooth and in Victoria too and would like to be more active on MI platforms.

Twice one brother was told he had BPD.  There was often a belief that a person with BPD type profile had weakness of character, ie just didnt try hard enough or the like. He tried plenty hard enough, but we were at the bottom of the family and social pile. Anyway that was the way it was in my extended family.

As our family had lots of schizophrenia in it as well, I dont really see it as better treated in the community.  It is true Schizophrenia does have a clear medical treatment protocol, which Personality Disorders did not have until the introduction of Dialectical Behaviour Therapy, but the symptoms can so bizarre people are still very immature about it. .

Sadly, we may not know that much about cancer, to prevent another premature death in my family.  My one brother who escaped the MI profile, was raised in adoptive foster family, ended up getting cancer. He has enough money and science to discover and explore the forfront of immunotherapies, but it will be a close call.

I really liked your discussion about labels and language. I have made a similar distinction between  those who are judgemental and the importance of being able to make a judgement call.  Also there is a difference between being a nice person and having a nice time.

About 8 years ago, when I was in a consulting room  whilst my son was being assessed for Aspergers, a female Indian associate doctor attacked me for not doing enough for him. her superior (a male but also Indian) later apologised to me. Interestingly a foundation text in my course on psychoanalysis and theory was about Indian culture.  I see socio-cultural issues everywhere where others may interpret them as pathology.

I have had my "guts" mangled to an extreme point by all manner of issues of a range of MI labels and concerns. Though I had had long term anxiety I know I also have a lot of courage and endurance. My barely alive.brother and I do make poignant jokes about courage and guts and feelings etc. He has stage IV colorectal cancer.

Not arguing, just sharing my response furthering discussion on an important topic.

[Viv]

Hi Appleblossom, thanks for the opportunity to expand a little.

I am really sorry your brother has a terminal cancer. It sounds as if he has had some difficult challenges to reconcile. And you yourself, as you say a gut wrenching time with MI. I do love your sense of humour but it covers a lot of hurt I would expect. 

I suppose you realise that once upon a time in the dark ages, BPD was not differentiated from schizophrenia. We have come some way along the road of knowledge. In the general community, much is understood about schizpophrenia as a mental illness. For example, people with schizophrenia are not told to 'get over it' or 'toughen up'. If a person with schizophrenia is suicidal, I don't know that they would be discharged from a public hospital with 4 tablets. You could correct me if that would occur. As you suggest, schizophrenia has a clear medical treatment protocol. You will see in that para I have gone from the general community to the medical community.

BPD is not really known about in the wider community. If you hear the words and think, as I did, that they suit your daughter's symptoms and go looking online, you will be distressed and disturbed to see the diatribe of venom that is online, direct at those who have BPD.  That was my experience. The amount of misinformation is legendary too. If a suicidal person with BPD presents at a hospital, they are more than likely to be discharged with 4 tablets, no follow up, no referral and no explanation/diagnosis - as occurrred to a 17yr old member of my family earlier this year. The stories of self harming people and suicidal people who present at a hospital and are told they are just attention seeking and all the rest, are legionary in the BPD Community. We have Clinical Practice Guidelines for the Management of BPD published by the federal gvernment and freely available online or in hard copy. But misconceptions abound. Just last night I was chatting with a counsellor employed in the public system who comes into contact with people with BPD who said that BPD and NPD are the same... ouch. Even those with the best intentions say 'there is no cure' which is just not so - it's an irrelevant comment. Cure is for killing germs and virus...

Imagine how hurtful it is for people affected by BPD (consumers, carers and those who work in the area) to know there is treatment that leads to recovery but 1) getting a diagnosis is so hard 2) getting treatment is even harder. The illness is challenging enough without the obstacles presented by stigma and discrimination.

8yrs ago you were 'blamed' for your sons Aspergers. I think the phrase commonly used was 'Ice Mothers'. That wouldn't happen today would it. Today mothers of people with BPD are blamed. 

Yes, with BPD there is stigma and discrimination in the community online, the general community of Australia really doesn't know about BPD. The painful discrimination however, is in the clinical field, with the 'helping professions'.

I am sorry there is no recovery for your brother. I hope he is getting the sort of treatment you would want for him. Our public health system is, I believe, so much better these days when dealing with cancer of all varieties. I hope the time you share together is blessed by much 'wicked humor' and loving care and treatment from the medical profession. That's only as it should be.

ps I also understand the pain of anxiety (& depression)... my family is riven by BPD sadly, an unhappy environment to grow up in.

[Appleblossom]

@Viv

Thanks for your concern re my brother with cancer.  I know you were just talking metaphorically but as it is a current issue, I thought I had better air it.

Is it DBT you are talking about as a cure for BPD?

I had 2 brothers, but only one still struggling to live.Yes I think he is ok for the moment; took kids to stay at the family farm with an old friend .. a very Aussie farm. He is much more Aussie than we were as he was raised going to the RSL as a kid.  Normal to some .. to the NSW dept Human Services, not to Mum or me!

Re BPD in the community, I hear you loud and clear. The other brother, who I spent a lot more time with, (though we were split for 5 years when wards of the state) was told a few times he had BPD and nothing could be done. He had many hospitalisations for self harm (1980-90s). 

I know about highly vulnerable people being fobbed off with a few pills and told to go home. Once he came to my flat and he was so close to the edge all the time. I couldnt contain him and he had a violent flare up. We should have given a lot more support, definite follow up numbers and protocols.  It was during that time that a cousin whose dad was a big manager for a big complany, came round with injectibles for my brother.I threw him out, but very tricky when some people are overconfident about forcing their rights on others .. More than I could handle .. hmmm.

Similar story 15 years later, when they sent him home to a new mum with a 6 week old baby; not appropriate for either of them in the state he was in. By then he was very physically and emotionally damaged. It did not end well.They played funny buggers with diagnosis because beds were short as Mont Park was closing that weekend

I have mentioned this story elsewhere on site.

I understand the rationales for treating MI within the community, but my family always seemed to fall between the cracks. Call my brother a martyr for deinstitutionalisation in an updated version of Foucault's history of treatments for MI.

Re Ice Mothers.  Maybe my mum was one. She confided her hurt about being blamed to me, but then turned the tables on me, so I call her a naughty nanna now.

I certainly was not. Apparently I was "hot" ha ha. My husband chose me because he had read up the experiments with metal and cloth covered surrogate mummy monkey.s I remember we had pictures on front of our biology texts.  . Expression, warmth, being chilled out and restraint all have roles in parenting or loving.

The confusion between BPD and NPD is very serious and misleading.  I agree .. ouch is being very polite.

I dont know about diagnoses of my daughters. they are both functioning quite well in their very different (polarised) "chosen" gender styles. Not terribly conservative, but neither am I.

I am all for more research and support for MI across the board.  That the incidence of MI is going up while living standards are going up that is sad to see.

I believe we need to do more research into the whole life cycle of adult humans.

While some support can be found in medicalising developmental difficulties. I also see problems in it.

I see the DSM as a changing and cultural tool and not set in concrete.

[Viv]

It must have been hard watching your brother suffer with his MI and feel so helpless. When parents have BPD, the effect on their children is so sad too see. It would be good to break the cycle of hurt and pain that occurs in families.

Full recovery from BPD has been known for many years. Dialectical Behaviour Therapy (DBT) is the 'gold standard'. Developed by Marsha Linehan et al, it is the most researched of the therapies. The next most researched is Mentalisation Based Therapy (MBT). Then there is Schema, Acceptance and Commitment Therapy and others. What tends to work best the data suggests, is a structured skills based program supported by individual therapy. And it should last for at least 12 mths. All this is supported by meta data. Also, there are lots of variations on these therapies being trialled. That full recovery is possible has been known for many years. 

BPD is complex. There can be over 200 different manifestations of the illness depending on the criteria. It is different for adolescents than it is for older adults and then different again in the elderly. It is different for men and women. But it is also the same. When you know about BPD, it all makes sense.

Problem is, BPD is stigmatised and discriminated against in the medical and helping professons. This means that people in these fields have prejudicial ideas. You mentioned how that affected your brother Applesblossom. I don't think it is the place here and now, to talk about the many different ways this is experienced by people with BPD and their families. Suffice to say it starts with being able to get a diagnosis (no diagnosis or misdiagnosis is rife) and then getting treatment is fraught with difficulty. In the public system, there is a waiting list of about 6 mths, and that is only for those at the serious end - so I believe. In the private system it can cost tens of thousands and the stories of mismanagement are many. And that is only for the lucky ones who can find someone in the private system.

It is critical that families be a part of the treatment process also, given the nature of the illness. But it is so rare that this occurs, and this compounds the difficulty in achieving a recovery. One misconception is that trauma causes BPD, or alternatively people with BPD have had a traumatic experience. But, there are people who experience trauma who do not develop BPD. Ok then, people with BPD have had trauma in their lives. Well ... people with BPD often report trauma, but as families know, these reports while apparently real to the person with BPD, are not necessarily true. OK then, people with BPD can be highly sensitive. Yes, a person with BPD cannot get sufficient validation in what many would think is a 'normal family life', their emotional needs are greater - but is that trauma? And, of course, there are people with BPD who have experienced terrible traumas. 

Another misconception is that people with BPD self harm. Well many do. Self harm has almost become fashionable amongst some adolescent peer groups. But not all people with BPD self harm as we understand it. Not all people with BPD are suicidal either.

Yep, the DSM is not set in concrete and for BPD it needs to change. The reasons it didn't last last time is because there was no agreement amongst those decision makers...But, when someone does get a diagnosis, it is a key to the possibility of understanding and treatment for the individual concerned and for their family. 

In his paper Preventative Strategies for BPD in Adolescents (2014) Andrew Chanen says: "... failure to recognize or diagnose borderline personality disorder limits appropriate intervention and risks inappropriate and/or harmful intervention." With a diagnosis treatment is possible and sometimes no treatment is better than inappropriate intervention.

Yes, there needs to be more and better research, but there is research that identifies how to ease the suffering of those with BPD and their families. It is just that the pre existing prejudices regarding this illness means that myths and misconceptions continue to be propagated reinforcing the neglect of those who suffer with the illness and their families.

It is such a sad and unecessary situation. The cost of doing nothing far outweighs the cost of proper treatment. And to stay abreast of the research for those who work in the field, costs nothing at all.

Thanks for listening, it is such a frustrating situation to see our BPD Community in Victoria, in Australia, suffering unecessarily. 

[Appleblossom]

Thank you. @Viv

I like your informed and engaged style. Just trying to clarify .. DBT gold standard from when? Just since 2000s or before?

I found what I have seen this week about DBT interesting. In some ways my therapy journey, which was an instictive reaching out for my own needs, follows similar paths that DBT employs.

My mother was so full of so many stigmas and shames nothing could be talked about.  Just Religion and God and her interpretation only. Yet she did her best and had a tough life dealing with my brother's violence to her and to himself. I always knew that but my needs got pushed completely out of picture.

I also studied psychoanalysis and put a lot of effort helping mum get her own education and act together.  Both my BPD brother and I were at her graduation, but on many levels she could not forgive me for being alive let alone think I might be supported or commended for my getting an education myself.  That is my struggle. 

Neither mother or brother were into counselling or talking about stuff except when there was blow up and it was just puiblic mental health a few pills and out again with little follow up.  I went to one family session for him, but mum was pretty uppity about all the shame, so she could not get down and dirty and help with any of the hospitalisations. 

With my sister (diagnosis schizophrenic .. but whats in a label)  she was interested in therapy, spent all her hard earned money on it, but maybe I just have to face it that the state of knowledge in the field was simply not up to our needs.  She suicided at 21 in 1986, after mum told her off for having a relationship with someone in a halfway house.  

I left home early at 16 because brother was starting to act up and it was difficult though I loved him.  He helped me carry boxes on the tram to my flat, while mum tried and failed to blackmail me into staying by going to a motel for a week?? I'd babysat and worked hard enough for mum at school, home and financially.  Paid first taxes at 13... there are sweat shops in Melbourne too. My brother even said he was proud of me for standing up to mum. Mostly I was a pushover.

I married a man from upper middleclass academic family who attended Mayo clinic in US and holidayed with brain surgeons just to give a sense of cultural divide.  In a way he taught me to use the Australian mental health system wisely, because I had low sense of self worth to access support.

I had plenty of understanding for poor mum's situation. Would never have given her cheek about abandoning us or not doing enough for us, but she was very DEFENSIVE.

Unfortunately, I have not had the same respect from my children, because cultural expectations differed so much.  My husband felt abused because he had to empty the dishwasher in his house during the 1950s. We did not even get a fridge til the 1970s.  Though we are all Northern European his family thought if the oldest child wrinkled their nose about food I was not doing enough.  Or if I gave sultanas to my biological daughter at 2, I was playing favourites. My side was full of horror starvation stories.  They just did not mesh up.

In many ways, not explicit, I have been blamed for the deaths as I was the oldest. I was separated from them for 5 and 7 years when I was 6.  The stigma of suicide is PHENOMENAL.  Yes I know people are scared, but they are grown ups with educations and houses.  How do we compare what makes us scared, with the stressors I faced?

Now husband's family pretend it was not MI in their family at all .. poor guy .. he just smoked too much dope (20 years daily). They use social and financial advantage to evade many things.

I am still trying to break the cycle of pain and hurt.  I said that in one of my first posts, yet I am more angry now then I ever was as an adolescent, after all my deprived childhood.  As I said to husband when still struggling to keep marriage together.  At least there was love in my family.

[Appleblossom]

Sorry for rambling. 

It was Refrigerator mothers that they called them .. @Viv ha ha and we didnt have fridge .. bloody Americans.

How about this misconception about MI: that it is caused by an absence of love, rather than a mismatch for needs.

There was love in my families but not enough to meet needs.  Families are rarely in total isolation, there is also wider social obligation.

[Viv]

Hi Appleblossom,

It does sound like it was tough growing up with the circumstances surrounding your family. There is an excellent video on UTube by Amanda, a wonderful woman with lived experience of BPD now fully recovered, from memory it's called 'love is not enough'.

Those of us with BPD in our families and relationships do benefit from going through a similar process to our loved ones with BPD. We benefit personally from learning about how to apply 'acceptance or radical acceptance.' for example, through learning techniques that bring us to mindfulness. The newly introduced Family Connections program takes us through that process... and it's free!

I hope you know about the Information Nights for example, that BPD Community Victoria have. The next one is on Carers Concerns: 26 August.

At the moment, I am really busy, so I am being a bit brief (for a change!) and not fully responding to your comments.

You did ask what I meant by 'gold standard' in relation to DBT. Well it's just a phrase, no special meaning. Marsha Linehan developed DBT. To become accredited in it requires travelling to USA. Her version of DBT is highly researched and shown to be effective, unquestionably. Then there are those therapists who believe they understand DBT and it influences their individual counselling - this is at the other end of DBT therapy. There are many approaches to treatment (MBT, Schema etc) what the research supports is a program of treatment that includes skill based training in concurrance with individual counselling for at least 12 mths. 

Take care,

[Appleblossom]

@Viv

A major problem in my family was that mum and brother did not want to work with MI bodies.After mum's shock treatment she hated them and hated it when we had to go to hospital for my generation. It took my mother 30 years to agree to come to a counselling session but then she was not genuine about working on issues more telling me off.  The good thing that came out of that series of sessions was that the counsellor had worked for the catholic diocese and felt compelled to share with me what she knew about pedophile coverups.  So she took my concerns about my father being sexually assaulted seriously.  Mum just wanted to shut me up.

It was my sis (who died at 21) and then me who took the therpay path.  I dont think it has to any one particular brand of psychotherapy.

Thanks for taking time to reply

[Viv]

Hi Appleblossom,

Living in a 'bpd family' is hard for everyone. In my own family my mother (undiagnosed), my sister, and now my daughter - not to mention those affected in my extended family. I am glad I am here now and not twenty years ago - I bet you are too.

Here are a couple of bpd facts:

You need 5 of the criteria to be diagnosed. But you may have 4 of the criteria and be very affected by it.

If you are raised by a parent with bpd, then you are likely to have inappropriate learned behaviours. If like me, you can see it across and down generations, then you assuredly have some issues to come to terms with. This is one of the reasons it is so important that the family be involved in the treatment process. As family members of someone with bpd, the techniques and skills we learn are similar to the ones learnt by the person with bpd.

Neuroscience can show the lack of neural pathways that connect the pre frontal cortex to the amygdala which contributes to the emotional dysregulation that people with bpd feel. To change this means to strengthen those pre existing pathways and to build new ones. In other words, people with bpd need to learn to think differently... and so their family members. Hence the skills training component of the therapy. Techniques such as validation, values based boundary setting and acceptance are essential. 

People with bpd usually have multiple issues: depression, anxiety (or course), eating disorders, substance abuse, bi-polar 1 and 11, Narcissistic and Anti social disorders are the most common. This requires dual diagnosis. What is often not understood is that treating the other disorders and not treating the bpd at the same time usually means all round failure.

While there is treatment which works, it is hard for the person with bpd to commit to treatment. And it is understandable to me why this is so.

Fortunately we have come a long way in the world of MI, but not quite so in the world of bpd. I think your mother may have felt defensive for being seen as the cause of the MI problems in your family, hence her reluctance to engage. While that is unfortunate, I understand that position. I also am tired of the stigma that says that mothers are the reason for their childrens' problems. That is my own personal bugbear in the world of stigma and discrimination with bpd.

The BPD Community Victoria contributes to replacing stigma and discrimination with hope and optimism in Victoria. NEA.BPD Aust has begun Family Connections training here in Melbourne. The good news is that people are working to bring about change: addressing the myths and misinformation that exist with bpd.