Update 16/11/17

When I created this new blog, I decided to eliminate giving personal information about what is going on in my life; I felt it was “better” for myself, and my future. Turns out I miss it, a bit, and actually if I turn my blog into something that is entirely factual and not personal, it sort of feels like I lose something. I guess deciding to totally eliminate it is a pretty black and white approach, and there can be a middle ground where I can say so much, without saying more than I really feel comfortable with.

(So here goes…)

Things are very up and down. Being in hospital was really just one very small step in dealing with what happened, and while I gained and progressed a lot in that time, really a lot of the hard work happens when you come out of hospital. It is easy to sit in hospital and think when you are out, life is going to fall together. Towards the very end of my time on a section I think I experienced a bit of a honeymoon stage.

We knew I was coming towards the end of my admission, and so myself and the staff became a little reflective on the progress I had made from the start of my admission to the end. I was praised for “taking control”, reducing my risky behaviours and learning to use my voice. I was praised for no longer sitting in silence and for communicating with professionals better. And that was nice. It was. But I look back now and feel a bit like a dog being praised for sitting. I feel in some ways like I was putting on an act to some extent, to please people. To look like I was “taking responsibility” for myself, like falling apart had been a choice, a “wrong” thing, and something I had inflicted on myself. It felt a lot like professionals were happy with me for not appearing overly “ill” or self-destructive. Happy with me like if I was still being destructive, they would not be happy. That if I was still being destructive, they would see me as being “wrong”. Almost…misbhehaving, being “difficult”. A choice.

The honeymoon stage consisted of certain thoughts. I thought I was not going to need much, if any, outpatient support. I thought I was going to be able to work. I thought I was going to suddenly feel functional, be able to socialise more, and just…not go back to where I was. And I can do that, for very short periods of time. Note: short periods of time. It feels like I have a bad period, pick myself up, but then I can only sustain that for a brief while, before it gets exhausting and I cannot force myself to be ok any more.

There have been a lot of different things going on. I was admitted for a short admission, which I made incredibly short by asking to leave the very next day. Before that I was nearly¬† admitted once, and since then I have nearly been admitted again. My friend passed away. I do not know what words to give it that feel “best”. She committed suicide. She died from mental illness. She killed herself. Life killed her. Her past killed her. I mean people say they do not like the use of the word “committed” and I used to get that. I used to agree, and to an extent I still do. And at the exact same time, now I have experienced that loss, I honestly do not care what words are used. She is dead. You can dress it up however you like, but it is not going to change the situation. You can skirt around saying how she died, but it is not going to make it any more ok.

It is not going to bring her back. Nothing is going to bring her back.

Other things: my medication has been all over. Without going through it all, I am basically still on quetiapine (I have been for years), the lorazepam I started taking (after being threatened with being restrained and injected) in hospital is now being changed to diazepam so that it is longer lasting, and duloxetine, which I start about six weeks ago, has been stopped and I am going to see a different consultant to my usual one to discuss what may be more suitable. I also had my prescriptions stopped from being monthly pretty soon after my discharge, to weekly, for reasons you can probably guess. I was made to get an ECG due to, lets say, medication misuse, and there was this discussion of changing ALL of my medication because of an abnormality in my PR interval (basically something wrong with my heart). The plus side is, my self-harm is really quite stable for the first time in many years. The worst side of that is hard to discuss. I ended up in some very similar situations/identical situations, to when I was sectioned. The plus side of that is, the mental health team I am under were, and still are, incredible.

More things: I had some job interviews. The one I was offered and accepted, it was the best job interview of my life (not that I have had many). It was a number of hours with different stages (individual interview, maths/written test, group test) and I honestly enjoyed the whole thing. Sadly I had to later turn it down. In the back of my head I was thinking “Natalie, your doctor signed you as not fit to work for six months and would probably extend that considerably”, but I wanted to work so bad. There is a lot of pressure in society to work and be “functional”. Dealing with that, and the shame, is a whole other post – I am volunteering though, gradually picking up more roles.

I regained contact with my father. I had my first phone conversation with my Grandma this week. My eating is INCREDIBLY messy, although not insufficient (I have gained weight), but it has a lot to do with my anxiety rather than my past history of anorexia…so yes, a lot going on.

I have good days, I really do. Just an awful lot of bad days. Not showering. Not wanting to move. Living off cereal. Knocking myself out with medication. Avoiding things. Staring into space. Losing time. I mean god praise the nurse that comes to see me; I would not want to come and see me 80% of the time. Sometimes I think “jeeeez Natalie, stop being so bloody depressing.” I just turn into a zombie and I cannot see any light.

But then I do see the light sometimes. I guess this was never going to be easy. The year leading up to being sectioned was horrific, the events surrounding being sectioned were horrific, being in hospital was horrific (although necessary on reflection), and being discharged back into “the community” (that phrase makes me cringe), was never going to be easy, even if I thought it was.

 

Your Personality is Disordered

The diagnosis of Borderline Personality Disorder (or as some prefer, Emotionally Unstable Personality Disorder’) appears to be a much debated issue at current. The diagnosis of personality disorder has been a topical issue for a long time, but with the upcoming ICD-11, this has increased

The idea that changing the title of the disorder would change the treatment of those labelled with this illness is questionable to myself; how can the ‘new’ diagnosis not then become stigmatised itself? It seems likely that the public, and more to the point professionals, would see any move to another diagnosis as “oh that is now basically people that had BPD” and the same narratives would develop.

As someone diagnosed with BPD I do not struggle that much with the title. The use of the word ‘personality’ is what I believe is the biggest issue that people have; that to deem a persons personality as disordered is not a true reflection of the issue, and being frank, insultive. I think that is a fair comment, and many believe your personality is something that does not change. The problem here lies in that. If your personality cannot change, does that mean someone with BPD cannot get better?

But here are my issues with that: Personality can change, surely, at least to some extent. And why is there this fixation on being able to get “better”, to be able to “recover?” Personality disorders used to be seen as pretty untreatable, and therefore why should the NHS plug money into treating something that cannot be cured? Well, actually, they should. Some people have problems that do not get better, but that does not mean that they should not be supported in managing their condition.

The fact is though, contrary to that point, that people with BPD can and do get better. There is plenty of research to back this up, particularly in the area of DBT. It just so happens that the NHS often does not provide this therapy.

Back to the use of the word ‘personality’. I have to go against what I said to some extent; it does affect me. When I have been in A&E for self-harm, or even somewhere entirely unrelated and I am asked what my diagnosis is, or why I am on the medication I am on, I used to pretend I did not have a diagnosis. These days I say it, but the words come out of my mouth painfully, and I feel sick to my stomach. In my head I am concerned about what the person in front of me is thinking when they hear those words. They probably do not know very much, and it is quite likely that they know the stigmatising beliefs that exist surrounding the disorder.

Is my personality disordered? If you asked me to describe my personality I would use words such as ‘caring’, ‘sarcastic’, ‘humorous’ and ‘weird’. I would not for one second think of my mental health. I would not say ‘unstable’, ‘destructive’ or ‘mentally ill’. It would not cross my mind. My issues are less to do with my personality and much more to do with my mood and emotions. In some senses that makes the label ‘Emotionally Unstable’ seem more fitting, but that also makes you sound like you are overly hormonal and a mess (being honest). I once read about the use of the term ‘Emotional Dysregulation Disorder’. I genuinely believe that is more fitting. Living with BPD looks and feels a lot like someone who experiences Bipolar, except your mood changes unbelievably fast, medication is much less useful and you are more likely to have a history of trauma.

I do believe that ‘Borderline Personality Disorder’ and ‘Emotionally Unstable Personality Disorder’ carry a heavy amount of stigma. I do believe that there are better names, and I do believe that issues with personality are not at the core of this illness. But is the name the issue? No, not really. I can get over the name. I just cannot get over the responses it invites. The issue here is the way in which people living with these types of issues are almost blamed for the way they are. Not by all, but by many.

There are many problems within this; far too many to discuss here and now, but they lay in the belief that people with BPD, particularly those who self-harm, are attention seekers. That they just need to sort themselves out, like acting the way they do is a choice. I think to some extent, because it can be difficult to treat, it scares professionals, and it becomes easier to blame the patient, again because of this fixation on getting better.

What we need is a better understanding of the illness, irrespective of the name it is given. I personally feel as though the fixation on the name takes away from the real problem. Label me however you want. If BPD is how professionals can understand and group together my symptoms, so be it. But please try to begin to understand that this set of symptoms comes in many different forms and combinations, that each person is an individual, and that often people with BPD have found themselves where they are after years of trauma and/or abuse. Trauma and abuse that they suffered as children; children who never got the help that they needed. Yes, we need a lot of help. Yes, it takes a lot of time. But that is because of how ingrained our problems have become, for no fault of our own.

We know you struggle to understand, and heck most of the time we struggle to understand ourselves. But slowly, in time, you can help us find our way. No matter how we are presenting, we do not want this at all. However hard to manage we can be for you, it is no way near as hard as it is for us.