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Monday, 4 July 2016

Stigma from mental health professionals

*TW This post mentions eating disorders, depression and self-harm but only briefly and with no details.*

This is is the third post in a series on attitudes towards BPD within the medical and helping professions (It's better if I don't write this in your notes and Leave or we will call the police).

Sometimes I am fairly certain that someone has treated me differently- and unfairly- because I told them about having a diagnosis of BPD. However, I am aware that it can be hard to test these hypothesises as facts, because I cannot recreate social situations, one in which I mention BPD and one in which I don't.

However, I am going to tell a story which illustrates the difference between mentioning BPD and not mentioning it during encounters with professionals.

So about a year ago, I made a phonecall to an organisation which places people with suitable therapists in your local area. Part of the process is having a phonecall with a therapist about what sorts of issues you're having and what your needs might be, so they can ascertain which therapist might be a good match.

I am very much used to talking about these things on a brief, general level, having recounted 'the quick version' to GPs and other professionals many times before.

However, I did feel quite exposed when she called, as it's not easy to answer: 'so tell me what makes you want a therapist?' and 'tell me about the sorts of problems you've been having.'

I told her about having a breakdown a few years ago, involving an eating disorder and depression that left me unable to leave the house for months. I also decided to tell her about overwhelming shame, guilt, sadness and how not knowing how to cope with that could lead to self-harm when in a period of stress.

I also told her that I had been diagnosed with Borderline Personality Disorder.

Giving no empathetic words to reflect how hard it might have been (and was) for me to say these three words, she abruptly said: 'Well in that case I need to refer you to one of our senior therapists'.

Senior therapists? The woman had just told me that having BPD meant that I didn't just need a therapist, but a senior therapist.

I work as a volunteer in a mental health charity on the phone to people who are talking about things they are struggling with. I am by no means perfect and I make mistakes, but I take the utmost care not to convey the message: 'your problems are too big for me, I need to pass you onto someone more senior than me'.

I do have to communicate with supervisors if an issue has a certain level of risk, however, I use my language very carefully and always continue to be the contact for that person. I don't want a person to feel that their story 'scared' or 'overwhelmed' a person. They need someone who can 'take' their story, or else there is the risk a person will conclude that their problems overwhelm others (and therefore may overwhelm themselves too) .

But at that moment, when the woman on the phone told me that I needed not just a therapist, but a senior therapist, I felt like my problems had inflated before my eyes. My problems felt enormous enough already without someone telling me they were even bigger than others they was like holding an overfull balloon ready to burst.

After this initial fear faded, I questioned whether the woman had her 'senior therapist' alarm bells set off the wrong reasons. Did she categorise me as 'resistant to treatment' and 'distrespectful of boundaries', or some of the even more harmful stereotypes, merely at the mention of BPD? I don't know.

The woman told me it would be almost twice the price to see a senior therapist and I was already overwhelmed about the cost, so I rounded off the call and didn't get back in touch.

Until about nine months later that is. It had taken me courage to decide- with more conviction this time- that I wanted to start therapy. I called the organisation, but this time, I couldn't face to telling the woman about BPD. I didn't have the words. I didn't want to.

I told her what sorts of issues were in my life, including the history of the breakdown, the eating disorder and depression. I also included the emotional instability, the self-harm and all the aspects of BPD. I was honest and detailed...But I didn't call it BPD, I didn't mention the diagnosis. And- surprise surprise- I wasn't told that I needed a senior therapist.

I've talked about this, and maybe there are professional reasons for why people with BPD need a senior therapist. I suppose some people with BPD might. But then again, some others might without a diagnosis of BPD, with a different diagnosis, or without a diagnosis at all. Diagnosis isn't always the be all and end all.

Diagnoses are a way of clustering issues together, I understand that. And therefore, professionals use diagnoses as a broad brush stroke way of categorising levels of need. But I also know that everyone with BPD is different, there is a spectrum of presentations, and not all will need a senior therapist (whatever that may mean anyway!) who costs more. I think there I think the woman handled it insensitively, when I told her my diagnosis. It left me feeling more vulnerable.

No wonder it took me months to tell the therapist I was matched to about my diagnosis. I was fearful of being told that I was 'too much to handle'. I was fearful that one of my biggest fears- that I am 'too much' for people to bear- was going to be confirmed again once and for all.


I am really happy that I found the words to tell my therapist about BPD, because I haven't yet come to terms with the distress that I've been through and the experiences with mental health (and mental health services, or lack thereof, as well).

When I finally managed to tell my therapist about BPD, she told me we could discuss what it means for me and the impact it has had on my life and how I view myself. I am finding this really helpful the more I talk about it.

Please get in touch with me (Twitter @bpd_orchid ) if you want to share your own experiences. I hope this makes you feel less alone if you have been through similar experiences.

Saturday, 2 July 2016

'Leave, or we will call the police' : My experience of A&E

*TW Self-harm and suicide*

Let me illustrate my previous post on stigma within the medical profession with one of my experiences of A&E. 

A few months after my diagnosis, I had some episodes of suicidal thoughts. I was very scared and I needed help. My GP told me that the only support he could give, was for me to travel to A&E and wait to be seen by someone. 

I didn't want to go to A&E. I felt that A&E was a scary place of flashing lights and injuries. But I was desperate, and if I didn't go, the GP would most likely call emergency services to take me, so I went.

Drawing by me

When I got there I waited and waited. I was then taken to a room not much larger than a cleaning cupboard. There were no windows. There were two members of mental health staff, nurses I think. Three chairs took up most of the room. Outside the room were curtains, behind those curtains were injured or sick people. 

I don't remember the conversation, but I remember the feelings. I was suicidal, on the brink of being actively so. The family member that was with me was so worried, they were asking for me to be admitted to hospital. 

I told them I had BPD and that I'd heard of a treatment called DBT that could help. The nurses told me they had never heard of DBT.

The nurses ignored what I was saying and told me that I had low self-esteem.  

Furthermore, I was also experiencing bouts of hypomania- the sorts of highs during which my self-esteem was actually very high.

Again, the nurses ignored what I was telling them. 

And here I was: begging for help, desiring for someone to understand this incredibly confusing set of mental experiences. Understandably wanting something like support. 

They told me I could join a a seven week waiting list for a self-esteem course that was starting in a local GP surgery. 

I reiterated how I was feeling right now. And again, they told me I could join the seven week waiting list. I said that I needed urgent help right now. Again, their response was, well we are offering you a seven week waiting list for a self-esteem course, so sign up. 

It sounds like I am making this up. It sounds like it cannot be true. But it is. It is not fiction, it is not exaggerated.  This is the dire state of NHS funding from the Tories right now.

Drawing by me

And so I begin to shout and scream to let out huge waves of distress and terror. I crumpled to the floor, sobbing, begging for help. It was the epitome of being 'completely beside myself'. I frightened, I felt abandoned, completely beside myself. 

The overwhelming sadness and fear, the suicidal me, had turned to raging anger. I was shouting, 'help me, please help me, help me' over and over again .

I remember their stern voices, towering over me: 'we have ill people in here, you are frightening them. You are not cooperating.' They told me to leave or they would call the police. 

What about me? I was suicidal. I was frightened. Where was the compassion? Where was the support? Where was the safety for me?

Drawing by me

It has taken me years to come to terms with this trauma. I'm not alone in how I've been treated whilst suicidal, unsafe and incredibly distressed. Things need to change. No one who is suicidal should be treated as unworthy of help.

'It's better if I don't write this in your notes': Stigma within the medical profession

After an hour and a half of questions, the psychiatrist told me that I met the criteria for Borderline Personality Disorder.

'It's better if this doesn't go in your notes,' she said, referring to my NHS medical records.

It's information for you, she told me, something for you to know. It doesn't need to be on official record. 

Being told this by a consultant psychiatrist communicated to me loud and clear that my diagnosis was something to be hidden. Something not to be shared, even with other medical professionals. It made me feel ashamed. 

Maybe she was attempting giving me freedom from a hugely stigmatised diagnosis. But being told that my diagnosis shouldn't be on my notes filled me with fear. It was something I carried around with me, taking care to hide from GPs, crisis mental health services, even therapists.  

I also know that I had an eating disorder, depression and anxiety written down in my NHS medical records without any hesitation. But according to a psychiatrist, it was 'better' if Borderline Personality Disorder didn't go in my notes.   

In the strange time that followed my diagnosis, I quickly learnt that BPD is amongst the most stigmatised mental illnesses, not only within society but within the medical profession too. Getting a diagnosis of BPD was completely different to my experience of being diagnosed with depression, anxiety and an anorexia-type eating disorder.

A much, much harder experience...

'It's better if I don't write this in your notes': Stigma within the medical profession

After an hour and a half in a room with her, the psychiatrist told me I met the criteria for Borderline Personality Disorder. In other words, I now had a diagnosis of BPD.

The next thing she said to me: 'It's better if this doesn't go in your notes [NHS medical records]'. 

It's my information, she told me. It's true, it is my information, and that has been a priceless blessing of now knowing what I'm dealing with. 

But at the same time, this psychiatrist, this NHS consultant, delivered me the message loud and clear that my diagnosis was something not be shared with other medical professionals. 

Maybe she was giving me freedom from labels. Freedom of choice to self-define. Freedom to leave my problems nameless. Yes, she was doing all of these things. But if she had written Borderline Personality Disorder in my NHS notes, then surely I should still have the right to have all of these freedoms when I encounter medical professionals. 

I also know that I have had Eating Disorder, Depression and Anxiety written down in my NHS medical records. But according to a psychiatrist, it was 'better' if Borderline Personality Disorder didn't go in my notes.   

In the strange time that followed my diagnosis, I realised that BPD can be amongst the most stigmatised mental illnesses, not only within society but- shockingly to me- within the medical profession too. Only a quick read online or in books, or a chat with someone who has experienced BPD, will tell you just how negatively BPD can be viewed by some individuals and organisations. 

But I know differently! I have known some open-minded, well-trained, thoughtful professionals who have treated me as a person and have respected all parts of me, including my diagnosis of Borderline Personality Disorder.

Sadly though, this feeling of keeping a secret about myself has meant that I have internalised a sense of shame. I'm happy though that I'm starting to acknowledge what I've been through.

I've realised, as Brene Brown wisely explains in her reknowned Ted Talk, 'empathy is the antidote to shame' , that talking about things can really help. If you have a wound, covering it up doesn't allow the air to circulate for it to heal. I think it can be similar for mental illness, 'airing it' can allow you to breathe for the first time.