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Why it is so hard to get the right treatment for Borderline Personality Disorder?

Since formally getting diagnosed with Borderline Personality Disorder my life has gotten more and more chaotic and hard to manage. The absolute primary reason for this is the lack of treatment available to BPD sufferers.

The treatment options are extremely specific and the type of therapy proven to improve the lives of people suffering from such a debilitating illness is called Dialectical Behavioural Therapy or DBT as it is known. It is a proven method developed by the World's leading expert on BPD, Marsha Linehan.

At the time of my diagnoses, I was having twice-weekly therapy with my Psychiatrist who I had been seeing for 6 years. He recommended DBT was going to be the obvious and most effective treatment option for me in line with the medication I was also taking for the co-morbid illnesses I have. Now, this is the part where it gets not only tricky but extremely frustrating and most of all, life-threatening.

You see, DBT is not a once a week hour session like seeing a Therapist. It is an actual course designed entirely around learning to manage and improve one's quality of life. The courses vary from Hospital to Hospital and at the very least require a full day of group therapy and once a week talking therapy. The other major factor is that it is such a specific form of Therapy, there are extremely limited places to actually go in the first place.

I was working full time at this stage and living in Sydney paying all my bills which were slowly sending me broke. It was one of the times my Doctor and I came to argue as he didn't seem to understand that it was entirely unfeasible for me to ask any Employer to take a full day off and potentially more time for a therapy appointment as well. Working in the Corporate world my entire life, I knew things simply did not work that way. Financially it was not an option in the slightest for me to have that much time off, even if I did manage to find an Employer that would understand and support me through it. I also had already had terrible experiences with work even supporting me to attend my current appointments, having to go through the humiliation of having forms filled out to state that I was capable of doing a job that I had been highly successful in.

So I started looking into what I could to do get into a DBT programme. I was told over and over that the waiting lists were full in the public system. At this stage, my work circumstances changed and I took a redundancy in order to take some time off and take care of my Mental Health. I had private health insurance so my Doctor and I agreed I would go to a Private Hospital to try and see what could be done. This in itself is another post entirely, but the end result is that I got a taste of the DBT course, which I loved but then was promptly discharged after two weeks. In total, my stay at that Hospital was over $6000 for the time I was there.

Leaving the Hospital with no further plan for any treatment, I was once again told I would have to go on the waiting list and pay for the treatment with my Health Cover, which because I had Psychiatry in my plan it cost me over $200 per month. So here I was, paying all this money to my Health Fund and not being able to access any DBT courses in the entire Sydney region.

I am 100% convinced that had I been able to access treatment I would not be in the position I am today and would not have had several further hospital admissions since.

Let me give you an example, disturbing as it is. Once I moved out of Sydney because I was unable to sustain a living and working in the condition I was in, I kept my Private Health Insurance active so that I would have access to Private options instead of the dreaded mental health system in the public health sector. My Doctor wrote a very very specific referral to a Private Hospital for me to do the inpatient DBT programme.

So once again I had to pump myself up to go back to a Psychiatric Hospital which I can guarantee you is far from a pleasant experience. But I wanted to be pro-active about my recovery so I took the leap of faith. I arrived on a Friday and was seen by a Doctor for about 10 minutes. I was then told that for the first 72 hours I could not have visitors, phone calls or participate in any activities. So basically I was told to sit around in my room numerating about the fact I was once again landed in the hospital. I was told that I would have to wait until Monday to see both my treating Psychiatrist and also the Psychologist who is in charge of all the group therapy.

I was climbing the walls by this stage, even though it is a Private Hospital, let's be realistic about the fact that no Psychiatric Hospital is a great environment. I became more and more distressed waiting for Monday to arrive and when it finally did I was so relieved that I could actually start getting the help I so desperately needed.

Now I promise you that this is going to sound crazy (pardon the pun) but this is what happened next. I was summoned from my room by the nurse who said my Doctor was waiting for me. I hurriedly threw off the sheets and followed her to the little room where he was waiting. He barely looked at me the entire time instead of asking questions he should have already known the answers too from the detailed referral from my own Doctor. I actually saw the referral in front of him so I can say with certainty that he had it. This wasn't my first rodeo of being sat in front of a Doctor who literally is just there to tick a box. I firmly told him that the one and the only reason I was here was to do the DBT programme. He wrote it down and said ok that's what you will do and he would see me in a week. Although I am fairly certain if he ran smack bang into me he would have no idea who I was because he paid such little attention.

Great, sorted, right? Not likely. The second I came out of the room, the Psychologist was waiting for me and we went back in and the "Doctor" left. She sat me down and asked how I was, which was a refreshing change from the Doctors interaction.

I told her I had really struggled over the weekend but was happy now that the Doctor had signed off on me starting the DBT course immediately. She looked perplexed which put me off straight away. She explained to me, that there is, in fact, no DBT course for inpatients and I would have to go on the waiting list which is 12 months to do the course as an outpatient.

I'm not going to lie, I exploded. I couldn't believe after all I had been through to get into the Hospital and the courage it took to go that they had evidently ignored every single thing my Doctor had written to them to admit me. I told her that just 2 mins ago the treating Doctor had literally just told me that I could start DBT immediately. Her response "well he got it wrong". My response was to tell her straight away that I wanted to be discharged immediately.

I had kept paying my Private Health Insurance for this very reason, so I would have access to more and to find out it was all for nothing was devastating. I also had to pay a $250 excess from my insurer when I checked into the Hospital. Needless to say, I wrote an extremely straightforward email to the head of the Hospital and received an arbitrary apology and a refund of my $250.

What they couldn't refund however was the traumatic experience of going to Hospital thinking I was finally after all this time going to be able to access the right treatment for my condition.

This is the curse of Borderline Personality Disorder. Being such a destructive illness to my whole life and not being able to access the treatment due to either money or waiting times is a bitter pill to swallow.

I remain positive that through my writing and my ability to learn and research that I can at least "try" and get through the best I can. But the reality is that this illness has cost me almost all of my friends, my job, my home and my sense of purpose. Being such a complex illness for anyone to understand and the stigma that still exists around it makes life tough on a day to day basis.

I have faith though that my determination and learning about BPD as much as I possibly can that I will get through it. But knowing that the suicide rate for BPD sufferers is very high, it's a tough road ahead.

But I want you to come on this journey with me, the more we understand about BPD the more we can support each other and our loved ones. Life’s a rollercoaster for everyone. For those with BPD, it’s a rocket to the moon.

This quote from Marsha Linehan describes BPD to perfection - “Borderline individuals are the psychological equivalent of third-degree burn patients. They simply have, so to speak, no emotional skin. Even the slightest touch or movement can create immense suffering” - Marsha Linehan

A beautiful image distorted by BPD
The twist of reality for Borderline Personality Disorder sufferers.

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