UNIVERSITY RESEARCH PROJECT: Your experiences as a support person

[Rachel Bailey]

Do you have a relative or significant other with Borderline Personality Disorder or another personality disorder? If so, you are invited to participate in an online survey from researchers at the University of Wollongong, Australia. Rachel Bailey and Brin Grenyer are interested in the unique experience of caring for or supporting a person with personality disorder on you, your life and relationships.

This survey is for people who care/support (or interact on a regular basis) with a relative or significant other with a personality disorder. It involves completing a survey on your experience of care giving, which will take approximately 30 minutes. To find out more, please click on the following link:

The survey can be found at

[peacebaby]

I made it halfway through the survey and got bored.

[Rachel Bailey]

Hi there.

That is understandable, it is a fairly long survey and could take up to 30 minutes to complete. However, we appreciate your effort and time, and your views and opinions. It is important for us to keep the survey fairly long, as there is not much research out there on the unique experiences of caring or supporting (or just generally having a relationship) with a person with personality disorder - and we are hoping to change this!

All the best,

Rachel Bailey

[CaptainM]

as there is not much research out there on the unique experiences of caring or supporting (or just generally having a relationship) with a person with personality disorder - and we are hoping to change this!

I'm sure a lot of us appreciate your interest in this area - I'd have thought more awareness about these issues can only be a good thing.

[needbpdhelp]

 

Hi Rachel,

Welcome to a great site for your research. I hope your survey topic will be mutually beneficial for all of us.

We appreciate your interest in those who care for, and/or deal with the family pain and suffering caused by this illness.

While many of us have borderline family members that are very high functioning, and don't require a caretaker - in the traditional sense - we do a lot of putting out fires - damage control - in our families, resulting from our partners'   

destructive, self-defeating behaviors.

Your survey is comprehensive enough that I believe most of us could benefit from taking it - I know I did.

If nothing else, it forces us - if we are honest with ourselves - to assess our own values and personality traits, that may have contributed to our dysfunctional family dynamics. This could point us in the right direction for making positive changes in our own emotional health.

needBPDhelp 

[united for now]

My thanks to you Rachel, for taking on this important - and overlooked - aspect of BPD 

We don't allow many surveys here, since this is a not for profit honcode accredited site. Yours was well thought out and of great interest to most of our membership. I hope that those that can, will participate.

[yeeter]

My thanks to you Rachel, for taking on this important - and overlooked - aspect of BPD 

We don't allow many surveys here, since this is a not for profit honcode accredited site. Yours was well thought out and of great interest to most of our membership. I hope that those that can, will participate.

If UFN endorsed this as worthwhile then, well, guess I will take it.  (I do everything UFN says... .) 

[megocean]

I did it, and thought it was interesting!

[iluminati]

All jokes aside, I appreciate your work, and I hope you're able to get support from throughout the Anglosphere.  Thanks for the effort!

[yeeter]

Hi all,

I dont mean to make light of the suffering that has occurred to this community, so hope there was no offense taken.  Its just my style to deal with difficult situations by injecting as much humor as possible.

Its definitely a worthwhile survey, and appreciated.  I took the survey and was happy to do what little bit I can to help others trying to deal with this disorder.  It didnt take long.  WE NEED ALL THE HELP WE CAN GET!

[peacebaby]

I felt like it was almost the same questions over and over again. But the nice thing was it made me realize how much better my relationship with my partner has gotten and how much less care-taking I do than I used to!

[Althea]

Great job!  I found it quick to get through and interesting.   

[1stand10]

Good survey as for once this focused on the "nons".  I too thought there were several duplicated questions but then again I know this may be intentional to determine if the person is answering the questions the same way.

One thing I tried to get across is either the lack of knowledge of personality disorders or the unwillingness to diagnose by mental health professionals.  I went through 14 years of marriage and counseling before I even heard of a personality disorder and then when I tried to explain to a counselor, I was immediately dismissed.

[Samuel S.]

Rachel, I tried clicking accept numerous times, and it failed to remain clicked. I would like to take your survey. Please help. Thank you.

[Clearmind]

Thanks Rachel! Good survey.

The last page was the most poignant for me. I live in Australia and I would have to say the support for family members of a BPD are pretty poor.

Knowledge of BPD is limited, group support for children of pwBPD is non-existent, information available to folks like me is also minimal. Thankfully I have a great therapist well versed in BPD - otherwise I have no idea where I would be. bpdfamily.com has been my group support component of my healing.

As for support for BPDs. We have a few institutions that I am aware of in Australia. DBT is horrendously expenses given the social nature of our medical system - BPD is not recognised by our government as a real illness and many Borderlines could not afford the cost of therapy.

I would love to see a support group in Sydney - we have CODA - however it just doesn't cut it.

Anyway thanks to you - we may get somewhere.

[truly amazed]

Hi Rachel,

as someone with a parent with BPD and ... .sadly not knowing what it was till I ended up with a partner with BPD none of this was covered via your test.

Thanks

[Sasha026]

I took the survey and realized that through asking questions over, but in a different way, it is more of a control measure, used in scientific analysis through statistics (had the course - sorry guys  ).

It was interesting. Hope my answers help with your statistical analysis of this problem. Maybe you should have included more questions on their behavior verses the consequences to the caregiver. I also think that as a "caregiver", one relinquishes control due to the aspects of the specific relationship. A child has no control over a parent's behavior, even as an adult. I also feel that no adult can have control over another adult. The only control one can achieve is over one's own behavior.

Also, there were questions related to medical or psychological care regarding the BPD. Here in the US, we have no input as family members due to the HIPPA laws. If the person receiving care tells his/her doctor to exclude you from information, the doctor has to, by law, exclude you. You can argue with the doctor, but in reality, they cannot give you any information.  

[sandpiper]

Hi Rachel

I am in Australia too and I too had a dreadful time trying to find anyone who understood the disorder.

There seems to be a much better understanding of it by therapists in the US and the most valuable knowledge I have has come as insight through other family member's therapists, at these boards.

With respect, I think that your survey is aimed at the lower functioning BPDs who 'waif' and self-harm.

My father and my sister both used to do this but when it stopped getting them the attention that they needed, they changed and became increasingly narcissistic over time.

I think you need to be aware that when BPDs stop acting in, they act out.

My father tried to kill me on at least two occasions when I was a child and I am NC with my sister because I believe she is equally capable of being every bit as dangerous.

FWIW after my father tried to kill me he spent the following week taking me to theme parks and buying me new clothes and toys - from one extreme of moods to another.

I have heard countless stories of BPDs threatening to harm others - particularly their children - and yet every time I see one of these surveys there is never a question on 'Has your pwBPD ever harmed you or threatened to harm you?'

There was some very good research done on filicide by Carolyn Harris Johnson at the University of Western Australia - you may wish to look at her book 'Come with Daddy'. She found that most fathers who killed their children either had NPD or BPD.

A lot of the women that I've met at these boards have told me that their mothers either threatened to kill them or else they passively almost allowed 'an accident' to kill their child.

I find it enormously frustrating that researchers don't seem to understand that BPDs can and will harm others - it is a part of the poor impulse control, the terrifying rages, the complete inability to consider consequences or to process logic when they are inside an emotional storm.

Nurses understand it, I have a client who is a midwife and she said that every nurse she knows in the maternity ward would like to see the babies of BPDs removed from their mothers at birth because they end up back in the hospital with such dreadful injuries from neglect and abuse.

[sandpiper]

Sasha, I just read your post properly - we have the same problem in Australia. Its a common complaint here among most family members who have someone with a mental illness.

DH and I were able to get an appointment with his mother's specialist where we voiced our concerns and made suggestions. We still don't have a diagnosis for her because of privacy. Thankfully at that point I knew about BPD so was able to tell the specialist about her behaviours and was able to suggest that he refer her to a psychiatrist. She's on medication these days which helps. I think the point to remember with MIL is that she spent 70 happy years terrorizing her family with her moods and caprices and it was only when her health failed that she turned into the self-harming, needy 'waif' type of BPD that the medics here seem to think is what constitutes the BPD picture.

Oy.

There is a long way for the psychiatric profession to go before they get a true grasp of the disorder.

Sadly the only time doctors see them is when they've self-harmed and as such they're only seeing the tip of the ice-berg.

I have seen Dad and my sister putting on the full on Woe is Me Waif performance for the GP and then 5 minutes later once the GP isn't watching, they switch into Power Tripping Abuser mode. If the medics could see the complete flips in personality that we see, their eyes would pop out of their heads.

[Undertowed]

I have heard countless stories of BPDs threatening to harm others - particularly their children - and yet every time I see one of these surveys there is never a question on 'Has your pwBPD ever harmed you or threatened to harm you?'

There was some very good research done on filicide by Carolyn Harris Johnson at the University of Western Australia - you may wish to look at her book 'Come with Daddy'. She found that most fathers who killed their children either had NPD or BPD.

A lot of the women that I've met at these boards have told me that their mothers either threatened to kill them or else they passively almost allowed 'an accident' to kill their child.

I find it enormously frustrating that researchers don't seem to understand that BPDs can and will harm others - it is a part of the poor impulse control, the terrifying rages, the complete inability to consider consequences or to process logic when they are inside an emotional storm.

Nurses understand it, I have a client who is a midwife and she said that every nurse she knows in the maternity ward would like to see the babies of BPDs removed from their mothers at birth because they end up back in the hospital with such dreadful injuries from neglect and abuse.

I think people generally want to avoid the hardest reality or dealing with them.  It's like the people who insist on calling child rape fondling or inappropriate touch.  They can't stomach the vicious reality.  At some point maybe people will be willing to see the ugly truth.

[claudiaduffy]

The survey can be found at

Rachel,

I may be the only one with this problem, but I'm stuck on one of the first pages, not knowing how to answer one of the questions:

"What is your relationship to your relative?"

-Mother

-Father

-Child

etc.

I am a non, and my mother has BPD. My relationship to my relative is "child." My relative's relationship to me is "mother." However, my first reading of this was that you wanted to know which word out of the list applied to my person with BPD, not which word applied to me... .probably because that's the way most surveys tend to go... .and now I really wonder which it was meant to be, and if everyone else just read it correctly and didn't have a problem with the phrasing like I did!

[Rachel Bailey]

Hi there.

Unfortunately I do not have the capacity to monitor this thread, however I am very grateful to everyone who has completed the survey.

I hope that the results of this survey will increase awareness for the unique experiences of caring/supporting/being in a relationship with a person with personality disorder, and therefore reduce stigma and increase support options.

This survey is part of a larger research initiative for personality disorders and I welcome those interested to have a look at our website: www.projectairstrategy.org

Thank you again for completing the survey. Your opinions are valued and I hope that through this research we can not only understand your experiences, but also learn of the intricate issues of caring for a person with personality disorder so that future research will capture more of your story.

Kind regards,

Rachel Bailey.

[Rachel Bailey]

Hi there,

This question is aimed at determining the relationship that you have with your relative with personality disorder. In reading your comment, your relationship would be "child". Thank you for your feedback on the phrasing of this question. I have now modified it slightly to hopefully reduce confusion for future participants.

All the best

Rachel Bailey.

The survey can be found at

Rachel,

I may be the only one with this problem, but I'm stuck on one of the first pages, not knowing how to answer one of the questions:

"What is your relationship to your relative?"

-Mother

-Father

-Child

etc.

I am a non, and my mother has BPD. My relationship to my relative is "child." My relative's relationship to me is "mother." However, my first reading of this was that you wanted to know which word out of the list applied to my person with BPD, not which word applied to me... .probably because that's the way most surveys tend to go... .and now I really wonder which it was meant to be, and if everyone else just read it correctly and didn't have a problem with the phrasing like I did!

[Rose1]

I also feel the parameters of the survey, at least from the introduction to be too narrow. Most of us are not really "carers" in the true sense of the word. For example under Australian Centrelink rules I doubt that I would have been considered a carer for my exh until he had a bi polar meltdown and his diagnosis for disability support was based on bi polar, not his BPD which was also diagnosed but not the focus.

From my point of view, as a carer for my adult D (not BPD) the level of support required as a true carer is totally different from the level of support required for a BPD relative.  Most do not acknowledge the BPD a being an issue and our support is therefore more a "holding the family together" and sole parenting while married rather than physically caring for someone with a mental illness. It is also trying to cope with mental, emotional and sometimes physical abuse.

I found cutting to be non existent in my exBPDh but he certainly had other risk taking behaviours. But you can't "caretake" for that I feel - caretaking to me implies the consent and co-operation of the person you are caring for as much as they can, if they are not in a coma.  My D for example is well aware of her need to have a caretaker and although she can be difficult, she doesn't decide to go off and do her own thing. She works with me as much as she can, to be independent. This is totally different to a high functioning, high IQ individual who doesn't think he has a problem but who thinks everyone else is the issue. More like an alcoholic I guess and I don't think we generally look at caretaking an alcoholic.

Perhaps my definition of caretaker needs to be broadened out. But I feel that mostly during the relationship it was taking care of all the family responsibilities - breadwinner, child raiser, peacemaker, social counselor and trouble shooter rather than caretaker.  And never any respite so that eventually you become so run down that the only thing left is to stop.

Rose

[UKannie]

I completed the survey but towards the end when I asked "is there anything we have missed?", I wrote

My mother is a 67 year old adult and undiagnosed. There is no prospect of her ever receiving the kind of help with her mental health that she needs.

BPDs do not get professional help for three main reasons

- provision of appropriate mental health services and expertise is unsatisfactory

- many of them do not believe they are ill

- many of their 'carers' do not insist they get help

I think the definition of 'carer' is problematic. The person who ends up being a PD'ed person's carer is often the relative (usually a spouse) who is prepared to hang around and take their cr*p. Is my dad a carer I wonder, or an enabler? He is never, ever likely to raise the prospect that she needs professional help with her.

I don't think this questionnaire will enable the authors to get to the bottom of a lot of the issues Adult Children face, or the difficulties (ie, abuse/neglect) we faced when growing up.

Annie

[Ankakusu]

I completed the survey but towards the end when I asked "is there anything we have missed?", I wrote

My mother is a 67 year old adult and undiagnosed. There is no prospect of her ever receiving the kind of help with her mental health that she needs.

BPDs do not get professional help for three main reasons

- provision of appropriate mental health services and expertise is unsatisfactory

- many of them do not believe they are ill

- many of their 'carers' do not insist they get help

I think the definition of 'carer' is problematic. The person who ends up being a PD'ed person's carer is often the relative (usually a spouse) who is prepared to hang around and take their cr*p. Is my dad a carer I wonder, or an enabler? He is never, ever likely to raise the prospect that she needs professional help with her.

I don't think this questionnaire will enable the authors to get to the bottom of a lot of the issues Adult Children face, or the difficulties (ie, abuse/neglect) we faced when growing up.

Annie

I agree! This also seems like it's more geared towards helping the PD'd than their traumatized children/families. I felt like saying, "but what if we *DON'T* care? For the sake of our own peace of mind? Can I be an uncarer?"

[peacebaby]

When I first saw this and responded to it, it was on the Staying board, so I assumed it was about care-taking partners with BPD. Which is how I answered it, but luckily didn't finish. I never did any care-taking for my step-mother with BPD, so I couldn't have answered this anyway.

Unfortunately I do not have the capacity to monitor this thread,

Wrote the original poster, making me wonder why any of us should have the "capacity" to take the survey?

[argyle]

@imma Y'know, from writing proposals and reviewing a fair amount of the available literature, I  believe that this university survey is a fairly reasonable approach to the study of relatively high functioning borderlines. (Basically, there isn't much literature because it is very difficult to identify and recruit the target population.

Sure - you're right - the sample is highly self-selected.  The results will be highly self-selected. They may very well be highly biased.  And - frankly - there's not too much of a guarantee that the surveyed people are answering accurately. If someone figures out a way to do a large study without these limitations - the results from this survey wouldn't qualify as much more than a sanity check.

That said - HF borderlines are very difficult to identify from the general population. (You're recruiting people with personality disorders?  Not me.  I'm fine.)  And, they're a big problem.  The problem with HF borderlines is that they seem to do an awful lot of collateral damage - so studying the impact on those associated with people with this disorder is important.  I strongly suspect that BPDs are far more damaging to those around them than most other mentally ill people.

Nearly any reasonable reviewer would accept an argument along the lines of:

'Yes, the data is limited.  But, well, there's nothing else available and this is a really important problem.'

Now, personally, I'm more interested in impacts on children, prognosis, and economic/medical impacts on spouses.  Ah... .interest groups... .But, the questions Rachel is asking are still quite interesting and could easily serve as justification for larger - population-based studies.  Well... .maybe... .I guess you'd need to recruit probably 100+k people taking a long survey MMPI to get a reasonable sampling of BPD caregivers - and - even then - the data would be pretty self-selected.

Only way I've seen to promote that would be offering discounts on marriage licenses to people who take the MMPI.

@Rachel GL with your research and best wishes.  You seem to be working on one of the more difficult to access and important populations of the mentally ill.**

--Argyle

*And, if you know of good studies on HF borderlines - I'd really like to hear about them.

**Oh, and if you're ever discouraged... .remember that doing a PhD thesis involves a lot of drudgery and despair.

[OTH]

Hi Guys!

I'd like to ask that we focus our comments on the survey questions, options, or lack of questions, options or other comments regarding the content matter of the research.

Comments regarding the design of the sample size, or research bias' are more appropriately handled by the monitoring professor or the peer review. We haven't seen the research objective or the sampling plan.

[truly amazed]

Hi,

On the survey.

I have an 83 year old UD BPD mother and recently had a RS with another BPD person.

The survey kind of missed what I suspect is common for many having a parent or loved one sibling with BPD and then ending up with a BPD partner.

I felt the focus of the test was on the NON and how they were as opposed to anything else.

Having dealt with my mother all my life boundaries are intact and at times like another said we have to step away and if anything be the uncarer ... .for self preservation.

What happened with my BPD partner very different and not knowing of BPD despite my mother till post RS ... .was different and boundaries were non existant in the main.

Neither of them sought help ... .BPD partner thought as they do despite a record of smashed RS and people it was everyone else. Mother ... .well she is the same and somewhat milder due to age ... .

Healthcare ... .my point would be I never had heard of BPD till I sought professional help.

It was like reading a book when I learnt about it. I had developed other means for dealing with my mother.

Specifically healthcare and also being an Australian found it to be very good ... .went and saw my local doc and he was great ... .got a T ... .with 30 years in the field so again no problems there with the system other than never hearing of this PD prior to the breakdown of a RS with someone with 8-9 out of 9 of the BPD criteria.

I suppose its a dream to have learnt about PD's somewhere in 12 years normal school and another 10 uni and post grad ... .but like most totally unawares.

Suspect this is the same for many if not most.

Good luck