Labels are for clothing……Labels are not for human beings!
Hi, I’m Kathy. I’m a time waster, an attention seeker, manipulative, argumentative, and I’m not worthy of care. Maybe I should have simply told you that I have a ‘diagnosis’ of ‘Borderline Personality Disorder’!
I have been a user of mental health services for over 20 years. The journey to my diagnosis, far from being a series of biological events was, in simple terms, the culmination of a range of social circumstances and traumatic events. It took me some time before I sought professional help. I handed my GP a handwritten note containing a couple of sentences about the trauma I had suffered as a child and told him how distressed, unhappy and isolated I felt. I was ‘diagnosed’ with depression and given antidepressants.
I was eventually referred to the mental health team. A psychiatrist, within 20 minutes of meeting me and with no negotiation, ‘diagnosed’ me with ‘BPD’. I accepted his judgement without question as after all he was an expert. I wasn’t told what this meant or how he had reached this conclusion, only that I should take some additional medication in order to feel ‘better’. I left with the prescription (which I later found out was for anti-psychotics); confused, scared and a little relived; at last I knew what the problem was and I naively thought that professionals would be falling over themselves to help me.
I read about my ‘diagnosis’. Looking at the qualifying conditions was rather like the opposite of watching your numbers come up on the lottery. One BPD trait; fair enough, two; that’s strange, three; not looking good, four; oh good grief but the fifth one – that’s the downer – the anti-thunder ball. I read the negative and derogatory web site information saying the disorder was untreatable and that ‘borderline’ patients are the ones most disliked by professionals. At a time when I was already fragile, already vulnerable, being ‘labelled’ and taking medication confirmed to me that it was my fault and I was worthless. I really felt for the first time ‘mentally ill’. That I had no control and that I must rely on services to make me ‘better’.
A few more years went by and my list of medications, side effects, therapies, outpatient and inpatient visits grew, yet I felt worse not better. I felt too distressed and powerless to question my ‘diagnosis’ and medication. I tried to tell my story about the trauma but no-one really listened. I was mainly asked questions about my ‘symptoms’. I had no space to say in my own terms and own words what my difficulties were, my positive strengths, and how my ‘behaviour’ had helped me survive. I endured many negative comments and assumptions due to my ‘diagnosis’. I felt frightened abandoned and alone. However, I continued to fulfil the expected role of being a quiet, unquestioning, passive patient.
Gradually, reality has dawned on me. Being diagnosed has resulted in me being defined, not as an individual who is experiencing understandable reaction to adversity, but as a set of ‘symptoms’ and a simple ‘diagnosis’. Unfortunately, the trouble with being ‘diagnosed’ with BPD is that anytime I speak up for myself, disagree with my diagnosis and medication, ask for help outside my allocated appointment times, complain about the treatment or state that the services offered are not helpful, I am commonly accused of lacking insight into my ‘illness’ or that I am exhibiting ‘borderline’ behaviour.
I believe that many of the professionals I have seen have been well intentioned but constrained by the system. There are some truly outstanding individuals. For the last few years I have been working with a wonderful CPN who was prepared to reserve judgement and look beyond the label. She sees a very sad, hurting, lost, fearful, extremely sensitive and vulnerable human being. She listens to me, and with care and compassion helps me make sense of my experiences.
Furthermore, joining the online Drop the Disorder group a few months ago has made me feel so validated. I feel like an equal alongside the many professionals in the group. It’s so informative and has given me hope that things are changing, that alternatives could be offered, and that I can be part of making this change. I am looking forward to attending the Disorder4Everyone event in London where I will still be wearing a label but it won’t be BPD! – it may be Primark or Next or Dorothy Perkins!