Diagnosis, one year on.

I've been doing a lot of reflecting this week.

Yesterday marked the one year anniversary of my diagnosis of Borderline Personality Disorder . Unlike a lot of borderline's I welcomed my diagnosis.

It began with a visit to a GP I hadn’t met before. I spoke to her on the phone asking for a referral to the mental health crisis team. She stated that she felt uncomfortable about making a referral without first seeing me, so I booked a time to see her the next day. Ben (my long suffering husband) sat with me as I tried to explain (in under 8 minutes) my long and complicated mental health history. This is always a frustrating experience but it became apparent that she had read my notes extensively and spoken to the psychiatric nurse I had seen the previous year. I was in a desperate place begging for help and relief from endless low mood. She offered me a one week prescription of tranquillisers. As she was handing it to me she said “see me next week, but if this medication doesn’t help its your borderline personality disorder not depression”. I took the script not trusting what I had just heard. Walking back to the car I turned to Ben and asked “did I just hear that right”? We both sat in the car speechless and stunned.

What just happened?

Well, I immediately went hunting for information. I had never heard of Borderline Personality Disorder, and I wanted to know everything about it.

Then the most amazing thing happened.
For the first time in 15 years, I knew exactly what was wrong with me.

You have no idea how wonderful that was.
You see, I had long held the belief that I was just not trying hard enough.

One in four will experience depression at some point in their lifetime, and of those most make a full recovery. Most, at some point, pick up the pieces and go on with their life, go back to work, engage with the world again. I could not understand why I was unable to do that.

What was I doing wrong?
What was I missing?
Why couldn’t I get over this?
Was I just lazy?

As I read and read, it became clearer and clearer that BPD was the missing piece. I read case study after case study and it was like I had written it. All the weird things I do, all the weird reactions I have were all explained and experienced by others, I wasn’t alone. I wasn’t lazy or weak, I had a personality disorder.

Of course the next issue is, what do you do with that?

I wrote emails to family and friends asking them to consider if they thought the same way as I did? Was I just hoping for a diagnosis? Did it really fit? The reactions I received were mixed. One friend said there was no way, another said that she could see me fitting “a few of the criteria, but, don’t we all?”

But Ben, the person who knows me better then anyone, that sees my day to day struggle, agreed, that I fit all of the 9 criteria perfectly. I then wrote the document, where I outlined and listed all the evidence that showed how and why I met every single one of the nine points. (For a diagnosis of Borderline Personality Disorder you need to meet 5 out of 9).

The next hurdle was to have this diagnosis made official. By this point I was under the care of the local hospital crisis team again and I requested a meeting with the psychiatrist that has been a constant overseer of my care since 1996, but in all that time I had never met him. The psych nurse said that she would ask at the next meeting. She phoned 2 days later saying that the team felt it would be of more benefit if I met with a specialist nurse that could look at medication options.

I was not at all happy with this outcome and stated, “I need you to be my advocate and get me an appointment with the only Dr in the team that can officially give me a diagnosis”.

I was desperate.

Six weeks later the day arrived, I will forever be grateful to my brother for being present at the meeting. I felt it would be too upsetting for my parents to be there but thought it would be very helpful to have a family member present. And it was.

It was a difficult meeting, with frank conversation with many hard truths and tears. It seemed however that the Psychiatrist was reluctant to commit to a written diagnosis, and said “if I had a classroom of students with whom I was explaining the BPD condition, you would be a perfect case study, but I don’t see the benefit of a diagnosis”.

It's a position I will never, ever, understand.
I explained how I didn’t agree and after a little more discussion said he would be happy to concur.

It was an odd moment. I felt like the hugest weight had been lifted off my shoulders, that I never again had to berate myself for not trying hard enough or for being lazy.

And yet, I had a personality disorder. That takes time to adjust and come to terms with.

That evening I phoned my parents and significant family members to tell them the news. A couple of weeks later we had a family meeting with the psychiatrist so that they could ask question and gain some further understanding of the condition. My family had been hurt and bewildered by my behaviour. They didn't understand, I was closed off and withdrawn. They saw my erratic and chaotic relationships and said I was rude. they were right, I could be inconsiderate and rude, because of my distress and lack of social skills.

For 15 years I didn’t feel able to share my difficulties because they didn’t make sense to me.
How could I explain, or ask for help, when I didn’t understand or couldn’t articulate what the problem was. I felt inadequate and misunderstood. I knew I was hurting people but felt woefully unskilled to do anything about it. I thought that if I stayed away, if I didn’t interact with them, then I couldn’t hurt them. Clearly that didn’t work.

Even now I know I have along way to go.

What came from the family meeting loud and clear is that they needed me to be open with my difficulties, at the moment the only way I feel able to do that is with writing them weekly emails. I am grateful that they are gracious and give me the opportunity to write. I understand this is the first step and one day I hope I wont be writing but phoning them. I know my writing has been hard for them to read at times and upsetting, but, I think this open, honest dialogue is helping. I feel like I'm learning the art of relationship much like children do. With the help of the intensive Dialectical Behaviour Therapy that I am now undergoing I am being taught skills that most learn naturally. Its very early days and I have good weeks and bad but I am hopeful that change is possible, that people do recover and go on to lead fulfilling lives. I'm working hard on “building a life worth living”, and learning that there is hope and BPD, that they can coexist.


Until next time,
Thank you for reading,
Clare