11 January 2018
I have Borderline Personality Disorder (BPD). While there is much debate about the name of this persistent and distressing condition, I feel lucky to have finally been given a name for something that is at times so harrowing to experience, with feelings of joy, despair, abandonment and loneliness often within seconds of one another.
In 2010 I was lucky enough to have been referred to Mentalisation Based Therapy (MBT) which was the turning point in my life – the therapy saved me from my destructive and sometimes near-fatal behaviour. Before the therapy I was always attending A&E. Yet it was only in January 2008, which saw me being placed in an induced coma for 3 weeks (having to be brought back to life twice) and in ICU for a month, that I finally started to get the right help.
I have no recollection of many of the years of distress, not only to myself but to my mother and my son. When I woke up from the coma I had pain all down the right side of my body, which has got worse over the last few years. I find myself with co-morbidites including Fibromyalgia, Chronic Fatigue, Type 2 Diabetes, Hemiplegic Migraines and obesity as well as BPD and recurrent depression.
There is so much stigma attached to the diagnosis of BPD. But I hope this is beginning to change.
I feel lucky to have finally been given a name for something that is at times so harrowing to experience, with feelings of joy, despair, abandonment and loneliness often within seconds of one another.
About 4 years ago I became a Service User representative after one of the managers from the Crisis Team believed in me and encouraged me to attend Manchester Mental Health & Social Care Trust’s Service User & Carer Forum (now Greater Manchester Mental Health Foundation Trust) meetings which led me to feel comfortable about using my voice to query and help shape services. At times this was difficult, for example when my BPD traits got the better of me and I showed anger and frustration, but I have learned to respectfully challenge people.
Earlier this year, while feeling confident I approached Jon Rouse, the Chief Officer of Greater Manchester Health & Social Care Partnership (GMHSCP) and over a cup of tea we discussed my life story. Jon really listened and wanted to hear my opinion on things. (I feel it wasn’t just for a tick box exercise or a quality requirement.) Leaving his office I emailed Peter Fonagy, whom I had met at a conference the previous year. He told me to get the ‘key players’ around the table and he would be there to support me. This is how the Greater Manchester ambition for BPD began. And on 13 November 2017 alongside Peter Fonagy and Warren Heppolette, I co-chaired a BPD roundtable meeting where leaders from across Greater Manchester met to discuss the GM BPD ambition.
I co-chaired a BPD roundtable meeting where leaders from across Greater Manchester met to discuss the GM BPD ambition.
In the meantime, four months or so ago, I began working as a partner with Warren Heppolette, Executive Lead for Strategy in the GMHSCP, who values my opinion and treats me as an equal. This partnership is a case study about patients leading the way. On my suggestion, we held a BPD workshop for those using or who had used services within the past 18 months within Greater Manchester. I designed and led the workshop. As a result we now have live data from people with BPD on what works and doesn’t work. The four clinicians that I chose to facilitate were all keen to be involved and the day was a success; although it was so emotionally and physically draining for me hearing some of what people go through to try and access services.
And now the message about BPD is getting heard nationwide. On 11 January, a new BPD Consensus document is being published at the House of Commons which I am lucky enough to be attending. I have also spoken at the Kings Fund and the Westminster Health Forum on Parity of Esteem and the devolution programme. And with the GM BPD ambition I am hopeful that we will stand united to make sure that people with BPD are no longer seen as too ‘complex’ or ‘manipulative’ to treat.
I am so proud of what I have achieved so far and it helps keep me well.
We matter!
