About a thousand years ago I was sitting in an office in Dunfermline’s Queen Margaret Hospital with my psychiatrist.
I’d just been disabled out of my job as a senior social worker.
I was lost. This was a job I’d wanted to do since I was 12. And now, here I was, with an unruly mind, out of work, without hope.
Hope was so distant a notion. I didn’t know who I was in every/ in any way.
A very strange time in my life.
I’d received a diagnosis – borderline personality disorder – that had so many negative connotations.
I had a degree in psychology where the head of the clinical psychology course had referred to it as the ‘dustbin diagnosis’, a diagnosis given to someone where they didn’t fit under the more clear labels.
A condition often deemed untreatable, unmanageable with labels like ‘manipulative’ and ‘dangerous’ attached to it.
As a social worker – working in different teams – I’d encountered many folk who’d attracted the label.
There was often frustration on both sides. People with this condition often express their needs in different – none conventional ways.
It takes time and application to develop the trust required to even begin to move forward.
Current fast fix, time limited, therapies like cognitive behavioural therapy are often ineffective because trust is just beginning to form as the course ends.
Often social work input doesn’t fit in well – especially when social workers are asked to assess the person and their situation in one 45 minute visit.
A person with this condition can swing from one crisis to the next as out of control emotions throw them about like a rag doll in a storm.
They’ll see one professional after another on a short term – patchwork basis.
With the expectation that the service is going to be fragmented, people with BPD often find it difficult to engage with professionals – after all, without trust, there is nothing.
Professionals are often results oriented. They’re often in their roles because at some stage of their life they thought, ‘Hey, I’m good with people.’
To be in a situation where their tried and tested techniques don’t appear to be working is horribly uncomfortable.
I know – I’ve been that professional.
So, often we end up in a situation where people with BPD are blamed for not being receptive to the services offered to them.
It can be a lose – lose situation.
There’s a high percentage of folk in male prisons with BPD – men who have struggled to control, to express their emotions have resorted to violence and/ or substance abuse.
And there I was, sitting with my psychiatrist, fully accepting the diagnosis, it described me well, wondering what’s going to happen next with this rudderless ship.
I’d come across a group of people who’d attracted this diagnosis on the interweb, who met up monthly in Edinburgh.
I tentatively suggested to my psychiatrist that I’d like to meet up with them.
‘No,’ she said, ‘these are very sick people, I strongly advise you to stay away from them…’
Given the professional world she’d been in – the world where folk with BPD can be seen as treatment resistant – this could be seen as reasonable advice.
I chose to ignore her…and my journey began…
I met the group at a table in a cafe who drew attention to themselves using a bit of paper with ‘the meadows book group’ written on it.
The thing that struck me when I saw them was that they appeared dazzlingly normal.
As a social worker it felt like I’d managed to sneak under the radar – I felt privileged to feel the trust of the people around me – and for me to trust them – all by virtue of the fact that I knew they’d suffered the ridiculous fucking torture that this condition causes.
This group was run – although I’m sure she’d dispute this – by Naomi Salisbury – a woman who worked with CAPS – an independent advocacy service in Edinburgh whose aim is to give a voice to users of services.
I felt she and I clicked rather quickly. Through talking – through sharing our experiences – she began to give me hope.
She was very involved with personality disorder conferences, and the driving force behind ‘More than a Label’ a valuable resource for sufferers, families and professionals alike.
Through her, I found myself contributing again, talking in front of 100’s of folk – including people I’d worked with in the past – ‘coming out’ as someone with a label – being involved with interviews, making films…
Who’d have guessed?
All the way through this Naomi helped me through these potentially treacherous waters – applying no pressure on me – accentuating my skills and my positive attributes all the way through the process.
On top of this I began to feel I was becoming a valued friend who could offer as well as receive support.
This was huge in igniting that spark of hope in me again.
Combine this with great group psychotherapy and the growing love of Ella, things really began looking up.
Naomi gave me valuable links – through her, the documentary maker Johanna Wagner got in touch and joined in with the journey.
I’m delighted to think of Naomi as a great friend now.
On Saturday Ella and I had the honour of attending the mixture of Ceilidh and Bhangra, of Indian and Scottish cultures that was her marriage to the lovely Gaurav. I’m still grinning like an idiot as I remember the absolute hoot of picking up her friends Magda, Penny and her partner Gary, as we got lost time and again in the beautiful Aberdeenshire countryside – to the meeting their families – to the exchanging of vows – to the absolute laugh of the celebration.
It was great to see that it wasn’t just me – she’d touched the hearts of so many – bathing in the love…
We’ve both come a long way.
Walk a mile