Trust and terminology
Another week down. This one has been very typically EUPD style - some periods have been super productive, some I’ve been incredibly low, some I’ve felt like isolating myself from the world and others I have been desperate for more human contact. All in all it’s left me pretty exhausted.
My EMDR session this week was just as intense as my first and perhaps even more distressing. I certainly felt incredibly angry, sad and lost in the immediate aftermath and could barely hold a conversation with my care coordinator in our appointment that followed it. I do appreciate the fact that my team are doing all they can to support me through this time though, we don’t always see eye to eye and have had our difficulties but right now they are providing what I need and for that I am grateful.
Thankfully, I have been able to function far better this week than I did last despite the tough session. I have been fortunate to be able to catch up with three friends from different areas of my life and have enjoyed their company. Every time I meet up with someone I question myself as to why they would want to spend time with me and think that maybe they are just doing it to be polite, but slowly I am beginning to realise that the likelihood of people doing that is slim (I wouldn’t repeatedly spend time with someone just to be polite either) and that maybe these friends do like me for who I am. It is all part of the trust issue I guess - I have to trust them when they say that they enjoy spending time with me and trust myself that I am worthy of people’s friendship. It’s a work in progress, alongside so much else, but I am slowly making headway.
This new month of September marks suicide prevention month and I have been working on my talk for a conference on International Suicide Prevention Day on 10th. Having come so close to completing the act myself, it is something I feel truly passionate about and so writing my presentation has kept my attention. There are several areas where I feel those with personality disorders are let down in crisis care and it has been good to write about them knowing that I will have a captive audience to hear my views. However, I am equally terrified at the thought of sharing those views because what do I know? I raised this concern to a friend today and she pointed out that actually, I DO know because I have experienced it. All the professionals, academics and other speakers at the conference may not have personal experience of what they are talking about, in which case they just think they know. That’s not to devalue what anyone else has to say at all, it just made me realise that my own story has value too.
The main issues that I want to raise concern the high suicide rate amongst those diagnosed with EUPD / BPD (which is astounding at 10%), the negative impact of stigma relating to a personality disorder diagnosis and how it affects care, and the misconception of the term personality disorder itself. I strongly believe that if the terminology that defines the condition was more suited to its causes i.e. trauma then the care that people with Emotionally Unstable Personality Disorder receive would be far more validatory and empathetic than what we experience now. In my experience, the causes behind the behaviour of people with EUPD are rarely talked about and the fact that most people with the diagnosis are dealing with some kind of past trauma is ignored. All some people seem to be interested in is the “manipulative” value of things like self-harm or suicide attempts and this stems from the stigma surrounding the term ‘personality disorder’. Where the label more accurately describes the condition, for example in Post Traumatic Stress Disorder, the trauma someone has experienced is seen as key and the crises that may arise as a result of this are treated with validation and respect. Despite 10% of people with EUPD ending their own lives (and 70% trying at some point to do so), the stigma surrounding our label often leads to our crises being played down, or worse, ignored.
I am going to get off my soap box now as I could go on about this all night (perhaps I will write a more detailed article on my feelings and post that at some point) but I do hope that I manage to give the talk in a week or so in a quietly confident and coherent manner. It plays into all my anxieties again but if even one person thinks it is interesting and thinks a little differently after hearing it then it will have been worth it.
Plenty of time in the meantime for the nerves to build up so I just hope I can keep positive, busy and functioning this week. If in doubt I must go for a run!