LIVING WITH BPD

Written by Tanya

Having BPD has been affecting me in such a way that I found it hard to make friends & maintaining friendships. BPD had caused me to run away from problems that would arise in my life. In my own upbringing there was no stability and that was very hard to deal with. As I kept running away from my problems I found a way to cope by keeping people at arms length. It started from the age of 7 (I was placed in group homes and foster care as well.) and it happened all the time. I thought if I could get people to hate me then I would be safe from getting hurt and having them get close and care for me. I also suffer from panic attacks, general anxiety disorder, anxiety attacks, bulimia (binge eating), obsessive compulsive disorder, avoidant personality disorder, passive/aggressive disorder.

As I grew up I didn’t see people expressing emotions and feelings so I thought it was normal. So I didn’t express anything to anyone. I became really good at hiding my emotions and feelings. I would let things go until something minute would cause the big explosion and who ever I was chatting with would cop all my anger. I would be very angry, snappy, irritable, very withdrawn & wouldn’t talk. BPD caused me to be indecisive and cancel appointments such as Drs, psychiatrist & counselor. This type of behavior happened quite often with me. I never noticed that something was different. Being a mum I found that I was questioning my ability to parent a child. As an abused child myself, I was questioning about my ability to discipline my child appropriately. Questioning if there was another way to handle my child’s naughty behavior. I was also questioning whether smacking and yelling were appropriate. I was a single mum bringing up a child (not knowing that I had BPD) on my own with no support from the father or the grandparents.

The Department of Community services (D.O.C.S) referred me to a family psychologist because I wasn’t coping with being a mum. They were concerned because I wasn't coping and they needed to know what was wrong so they could help me appropriately. D.O.C.S became involve with me when my son was 1 month old because I had shaken my baby and then dobbed myself in (what I did was called Baby Shaking Syndrome). The psychologist made an assessment but didn’t attempt to sit me down and talk to me about it. As D.O.C.S had referred me to the psychologist they wanted a written report and after they receiving it they sent it on to me to read. In the Psychologist's report I read that I had been diagnosed with Borderline Personality Disorder (BPD). The BPD label shocked me at first to the point that I at first denied I suffered from it. For the next 6 months I remained in denial and in all this time no one tried to sit down with me to explain what BPD was or what treatment was available. In that time they just kept referring me to places such as Redbank house: - a place where people seek help with parenting issues.

In October 2002 (6 months after I diagnosed with BPD) D.O.C.S removed my child from my care because of my inconsistency with keeping appointments, again not coping with being a parent, the emotional abuse, having BPD, putting my child in daycare a lot and having respite care often as well. My child was at risk of emotional abuse because of my yelling and screaming, saying he was naughty and getting angry with my child for no good reason and nagging so much that my child learnt how to switch off. My upbringing had a lot to do with the way I was parenting my child. I was raising my child the way my mum had raised me.

Emotionally this caused a lot of anger, a lot of tears and no understanding of what was happening. I was not able to think clearly and make the right decisions. Within a month after the removal of my child I decided to find out what BPD really was.

I spent so many hours, days and weeks searching on the Internet trying to find books. By now I was already referred to a psychiatrist and was seeing for the last few months. As I had done a lot of reading by now I found out that to get the treatment I needed I needed to be referred to a Psychologist. I approached my Psychiatrist and asked to be referred to a Psychologist. By December 2002 I started to see a Psychologist but it wasn’t on a regular basis because of Christmas coming up.

So in January 2003 I finally started to see my Psychologist on a regular basis. I asked my Psychologist what the treatment was there for BPD and what one was the most appropriate for me. I had a choice of either Psychotherapy or Dialectical Behavior Therapy. Right there I decided on DBT as I felt it was going to give me the skills to function in today’s society. Psychotherapy was going to deal with more about my parenting and my past.

DBT has given me the skills to function in today’s society. The skills that I have learnt so far are:

STRESS TOLERANCE: - topics covered in here are using wise mind, Teflon mind, observing

INTERPERSONAL EFFECTIVENESS: - covered Objective Effectiveness, Dear Man, Relationship Effectiveness: Give & Self-Respect Effectiveness

REGULATING EMOTIONS: - Reducing Vulnerability, Letting Go Of Emotional Suffering, Observing and Describing Emotions As the result of having BPD I also suffer from Bulimia (binge eating), Avoident Personality Disorder, Obsessive-Compulsive Disorder, Passive/Aggressive Personality Disorder, Panic Attacks, General Anxiety Disorder, Depression & Anxiety.

DBT is covered in group sessions as well as individual therapy (part of the contract to doing the skills). My family doesn’t know that I am going through this but instead I have my friend’s support and encouragement.

Doing these skills have helped me to be a confident and assertive person and grow in every way possible. I had bulimia for the last 5 yrs and now these new skills have taught me to like me for who I am (my body that is) it has also given me more courage to be more assertive in being able to say what I need to say with out being aggressive. DBT has helped me learn how to express my feelings and emotions.

DBT has given me the confidence and the assertiveness to approach each problem as they come up. It has also given me the strength and skills to face any difficult situation that may arise. I now have the skills to communicate with people when things are difficult and I am stressed. I still have a way to travel but so far the journey towards understanding and recovery has been one big learning curve.

Tanya - Dec 2003

WHERE ARE WE NOW?

The more I deal with this disorder (BPD), the more I am truly amazed at the "powers that be" ability to continue to turn their back on it. This sends the most powerful message to people that recovery is near impossible because they take no ownership that this disorder is even out there.

Alzheimer's, Bipolar, Schizophrenia are openly discussed, recognized, researched and funded yet a disorder that affects more than these disorders is kept under the blanket. After contacting the Director of Mental Health, Mental Health and Well Being, Canberra on three separate occasions, in regard to Borderline Personality Disorder I have yet to receive a reply. I have received three (3) notifications that my requests were passed on to the Director of Mental Health but that is as far as it has gone. Never a reply.

This site has put four (4) Borderline sufferers in contact with Government funded BPD authorities and each of them received "sorry we are unable to help you". One lady, who was being seen by her local regional Mental Heath Community, was advised that the best they could do for her was to medicate her as no therapy was available in this area.

I can confirm that one positive has come over the last year and a half when I received a reply from The Royal Australian and New Zealand College of Psychiatrists who stated and I quote "I can confirm that the College would consider BPD to be a disorder". A small step maybe as they would consider it a disorder but that is better than they haven't decided. As far as any strategies or treatment options nothing was made available.

In the meantime, sufferers of this disorder will continue to live a daily life of fear and misery, those who love and care for them will continue to continue to wonder what the hell is going on, suicides by sufferers will continue, marriage and relationships breakups will continue and most of it will be because people do not know what is going on or what Borderline Personality Disorder is.

Those who suffer from this disorder and are in some form of therapy are doing it alone. A lot of people I have spoken to go to therapy but they have little or no support outside of their one-hour weekly/fortnightly/monthly visit. Many have attempted therapy but soon stop going because it becomes so emotionally difficult for them to deal with all the issues. For an hour they work through their thoughts, feelings and actions trying to understand and correct and then walk back out into their real world, a world where others know nothing about the disorder, a real world where they are alone again. And I must say that some of these people are the most amazing people I have spoken to. They are raising kids, caring for families, finishing university, holding executive jobs whilst dealing with this chaotic disorder.

Revised Aug 2002

FISHING FOR AN ANSWER

Imagine getting into your car and driving. Your mind is blank but at the same time it’s racing with thoughts. You are mentally alert and fully awake. You see nothing but the road ahead. You arrive safely to your destination but you have no clear concept about any scenery that you should have noticed along the way. You drove through a fog like setting into an unknown journey to your destination, as if you were programmed. You snap back and look around and hear a conversation among strangers. They are speaking about the warm and sunny day. You think, "huh? It’s sunny and warm outside? I didn’t even notice!" Then you turn and look at the outside and smile as it's gorgeous today!

This is what my everyday life is all about. This is what being a borderline is like to me. My mind is clouded with racing thoughts. I am distorted to my surroundings, until I am alerted to them. My life is jumbled and goes up and down like a yo-yo. Or picture a fishing line - I am casting out and reeling my line in before I have a bite or a fish.

Thankfully I have acknowledged that perhaps I do have problems and coping with day to day things don’t have to be as bad and troublesome as I see them. I am in therapy and will be sorting through and working on my issues and learning about what is bothering me along the way. It will be a long process- like climbing a flight of stairs to get to the top. Right now I am only on the bottom step. When I reach the top I will be aware of my surroundings, my self- worth, and I will become a stronger human being. I will be able to smile and recognize the beauty that surrounds me. Knowing that I am not alone has made me feel so much better.

On October 8th of 2001, my very first session with a therapist, I was diagnosed as being a person who has Borderline Personality Disorder.

Being diagnosed as being a borderline is challenging; this we all expect. I wasn’t scared of these changes in preparing for therapy. I went through the motions, searching for information that would give me hope for my future. Not one word could raise my hopes or repair the broken dreams of the life I had imagined for myself. I thought that I was well prepared to accept therapy and this disorder, but there is no way to prepare for this.

As days went by I found myself soul searching deeper than I had ever had before. I wasn’t about to let myself down. I found the therapy that I needed and some just because I was entitled.

What is Borderline Personality Disorder? At first I searched the internet for answers. I located several web sites with well prepared information on this subject that gave me the answers that I needed. Still not satisfied, I searched for more information. I came across "The Shack" where I knew that this one was the one for me! The Shack contains all of the information that I previously found on BPD, but it felt more of a family orientated place. The terms have been simplified so that I can relate better. The Shack and its support are an experience that I will cherish and will continue to do for myself and anyone who needs me.

Everything that I was doing in learning about BPD made me feel more in control. I felt that BPD invaded my life, but it had not taken over. No matter what BPD was going to give me, I was prepared to call it’s bluff.

Since I’ve accepted that I am a person who has BPD this has given me the passion to make a difference, not only in my life- but also in my family and friends lives as well. Through therapy and the support from The Shack, my confidence and guidance has been supported. None of this would be possible without a loving family to support me too.

While my journey takes place I will continue my therapy for as long as it’ll take. I hope that I will make a difference not only in my life and my family's but also in the lives of others as they come to the message boards here looking for help, support or answers to their BPD questions.

Lisa - March 2002

A SOFT CENTRE MAYBE?

Just in case I offend anyone I will get my apologizes out of the way early. I am sorry for not understanding what is trying to be achieved, I am sorry that I do not know what role to play during the therapy process, I’m sorry if the support I am providing is incorrect and I'm sorry.

I have strong personal beliefs on therapy because no one except the therapist and the BP know what they are trying to achieve. The brick wall stock standard answer is "sorry, because of strict confidentiality rulings we can’t discuss that with you" or "sorry I don’t see any use in you being involved in YOUR partners therapy". Families/partners may as well give up because they are in a "no win" situation. If the BP stops going to therapy, stops medication or the new skills they try aren’t working then it is the family/partner that will have to deal with the immediate consequences, and once again start the rollercoaster of "is it something I’m doing", "did I not handle that situation correctly". Sure I hear the cries of but "you are in control of your own feelings and thoughts and you shouldn’t feel responsible". And that is true, factually it is brilliant, straight from a book type answer because the only element that has not been included in this equation is the family/partners true feeling for them. You see they want them to feel good about themselves, they want them to development new coping skills, they want them to feel the improvement within themselves, they want them to be what ever it is they truly want to be. Sorry but they "love" the person who is hurting and rightly or wrongly they feel and see the hurt and they want to understand and even help if required. In some situations of learning the BP has to learn to cope without active support. Is the support team responsible? No. Does the support team love and care for their BP? Yes.

My background is Business and Management Training and I know that in business you discuss the direction you wish the business to take. You set your goals, both long and short term, refine them, align them, document them, set your strategies, advertise them to all, make sure everyone knows what you are trying to achieve and their role in achieving them so that everyone WORKS TOWARDS A COMMON GOAL. But with BP therapy, members of the immediate family/partners are excluded from knowing what is trying to be achieved. They are expected, and sometimes demanded to provide support (well they are in the relationship aren’t they), they have no idea of the direction (long or short term) that is being taken, they have no idea if they are reacting appropriately to certain situations and they have no idea if they are helping or actually hindering the recovery process. I received what I believed to be good advice – establish boundaries, do not jump to their every request for you to act, support them but don’t protect and smother them. If they refuse to help themselves then there is nothing you can do for them. Within a month the relationship was over. Both people wanted to reach their goals and get their relationship back on track – but both had different understandings and were pulling in different directions. Do I blame anyone – NO. I had no answers to the why’s, I had no idea what BPD was, I didn’t know what was happening to us and more importantly what was happening to her and the answers weren't forthcoming. But not to worry, months of reading, research, therapy and heartache and I found out about the mysterious Borderline Personality Disorder. A Psychiatrist said to me that "…. the person who is suffering from the disorder should take the responsibility of telling those who support them what is happening with their therapy and what role partners/family can play". My simple answer to him was – "go back and re-read the Diagnostic and Statistical Manual IV criteria of diagnosing BPD!"

A silly analogy but it makes the point - if a therapist says to a BP "for a month I don’t want you to eat chocolate as it has a bad affect on you" the supporters/partner cannot be held responsibility or accept any guilt because they came home with a ‘box of chocolates’. I know you are right, we are not to blame and we shouldn’t feel bad, but unknowingly we hindered the process. (And I can hear you women out there muttering to yourself "as if my male would bring me chocolates anyway!! tee hee)

Therapy is a must, it is vital to a BP's recovery but you cannot expect them to go through it alone. The great news is that some therapists are prepared to involve loved ones and family in the recovery process and you’ll be glad to know the early results so far are showing some good progress. We are doing our own study where family/partners are involved in the therapy process. All roles are defined and the family/partners involvement is purely supportive, aka ‘Big Ears’ all listening and supporting, no advice – supportive knowing what the goals are and what is trying to be achieve. Universal accreditation standards of CARF and JCOH mandate as much partner/family involvement as possible be integrated within the therapeutic process. It is the duty of the therapist to encourage their client to be open to sharing parts of their treatment. The therapist should obtain signed releases in order to do this and it should be included within the treatment planning process. Research has already proven that the recovery process increases within a team environment. An agreement between the BP, the partner/family and the therapist is reached and documented. Discussions with each party are held, feedback is requested, all parties discuss how things are going and common goals is aimed for – the BP is feeling good about therapy, is seeing the results and is learning new skills to assist with the disorder. This isn’t ‘sugar coating’ the process as they are still have a lot to deal with on a day-to-day basis but results are achieved and highlighted. The BP starts to feel good about their progress as each step is taken, they have people supporting them and they can see their improvements. The family/partner would feel good because they know what the goals are and have a solid idea of their support role. I am sure that both parties would feel good about being part of the recovery process and more importantly they see change in the person they so dearly love and in the person who loves them. "Love", "Warmth" and "Nurturing" are the underlying basis for all copying skills developed.

Therapists are trained to cultivate detachment and not to express any feelings towards their client, and understandably so. But to the BP this detachment could be seen as a re-traumatization in which the parental figure withholds love and support. If so, then it is absolutely critical for someone else in the BP's life, the partner/family members, to be involved in the recovery process to offer this love and support. I urge anyone else who has a partner/family member to talk with the therapist and get involved in the recovery process. Stay tuned for further progress reports on our study.

It’s easy not to buy "a box of chocolates" when you know what the goals are that everyone is striving for. Until shared therapy or something similar happens; I'll just have to listen to Forrest, Forrest Gump "life is just like a box of chocolates".

I would like to hear from anyone currently in therapy or supporting a loved one in therapy as to how things are going, the type of therapy, what is working etc. Send your story to (ISP e-mail address required). The information supplied will be treated as highly confidential and will not be used in any form without your consent.

Footnote:

Why is it that this disorder affects so many Australians and the partners/families yet no one knows about it. How long has it been known? That was a rhetorical question as the answer is many, many years. Back in 1996 an organization was formed because of the lack of information and understanding of BPD. In 1997, during discussions with the Australian Government it was agreed that if they covered the 10 personality disorders (as per the DSM Psychiatric Manual), funding would be provided for the production of National fact sheets on the disorders. Once produced they were sent to Professor Richard Meares, Head of Psychiatry - West Mead NSW to be endorsed and then back to the Federal Government for approval and funding. At this time they were advised that endorsement from each State Health Minister was necessary before funding would be forthcoming.

While they set out to achieve this, an internal dispute within the Psychiatric Profession erupted over what constituted effective treatment of Borderline Personality Disorder. While trying to provide a platform for the Medical profession to decide the correct treatment Protocol for the production of fact sheets, the organization was forced to close down due to lack of funding. It is interesting to note that several of the strategies contained in their papers were adopted by the Government, yet no funding was ever provided.

So the political tennis match continues. Recently a Government initiative (Beyond Blue) was introduced to lift the awareness of depression and the affects it has on people. BPD does not even rate a mention on any of our Mental Health sites (apologises to those who do supply two lines on the subject, especially the Alfred Hospital who have a brilliant brochure on BPD). In February 2001 the Society of Psychiatrists were still debating if BPD is a legitimate and recognized mental disorder.

So the frustration continues, BP's continue to suffer greatly and deeply, there partners/families finish up in therapy as well and unfortunately suicides and attempts continue. But the good news is that the political tennis match is one set all, 15 love in the third set so maybe by 2007 we will have some recognition and support for this disorder. As for the Psychiatric Society, well not only have they not agreed upon what constitutes effective treatment of Borderline Personality Disorder, they seem to have taken a giant step backwards by not even officially recognizing the disorder called Borderline Personality Disorder. So I am unable to let you know the score at their tennis match as they have yet to work out who will serve first.

~mjtacc~ Oct 2001