Adventures in Psychiatry : disagreeing with a diagnosis of "emotionally unstable personality disorder"

Oh how the medics within the mental health care system frustrate me...

Following on from my last post, where I mentioned that I had yet to get an appointment with my new psychiatrist, I have discovered the reason why. For reasons that I really don't understand, this doctor took it upon himself to 'assess' me based on what I imagine are very out-of-date and inaccurate notes from my case file. I don't know if it's just me, but that strikes me as being a) rude and b) lazy.

Based on his 'review' of my history, he concluded that I should be diagnosed with "Emotionally Unstable Personality Disorder" aka "Borderline Personality Disorder". This is a serious diagnosis, and should not be thrown around lightly. What scares me most, is that not only is this completely and totally WRONG  but the level of stigma within the mental health system, hell the NHS as a whole, attached to this diagnosis means that I would be effectively black-listed for the rest of my adult life.

My CPN broke the news to me during our session last week and I could feel myself being taken over by the 'bad' part of me that belongs to my paternal lineage (in other words, dissociating) .... It took all my energy to stay in control and she could see how scared and upset I was. She agreed with me that there is stigma and while she doesn't 'buy into' the misconceptions surrounding people with the condition, she knows it exists and frequently comes up against problems when advocating for other patients.

So. I asked for a meeting with her and the psychiatrist to discuss things. Thankfully this request was accepted and I will finally meet my consultant psychiatrist on 8th May. Needless to say I will be going armed to the teeth with why I know he his wrong and what I think could potentially be the problem. I love that I am at a university with a medical school. The library has everything I need!

So. Why is he wrong? Let's look at the diagnostic criteria for Emotionally Unstable Personality Disorder (DSM-IV-TR) via :

The criterion states that you must meet 5 and the symptoms have a significant impact on your day-to-day living:
  • you have emotions that are up and down (for example, feeling confident one day and feeling despair another), with feelings of emptiness and often anger - my MOODS are up and down, but they are not transient or changing daily. I get angry when something pisses me off. I don't feel empty, quite the opposite! I do not experience emotions 'intensely' and can remain in control.
  • you find it difficult to make and maintain relationships - let's see, I've been with my current boyfriend almost 5 years, and we've been friends since 1999. I've made friends at university and have maintained the relationships, which I value so very much. I've made blogger friends too!! No arguments. No drama.
  • you have an unstable sense of identity, such as thinking differently about yourself depending on who you are with - erm, no..... just, no. That doesn't make sense to me.
  • you take risks or do things without thinking about the consequences - only when feeling 'high', generally manifests in excessive spending or piercings. I'm not a 'risk taker' per se.
  • you harm yourself or think about harming yourself (for example, cutting yourself or overdosing) - yes, and it is very scary to me as I have no reason to self-harm. Those thoughts do not feel like my own and I wish it would go away. I have not self-harmed in almost 2 years.
  • you fear being abandoned or rejected or being alone - nope. I'm dealing with my issues that stem from my previous relationship - being physically/emotionally abused again - and I only have issues with being alone in my house because it's so big!
  • you sometimes believe in things that are not real or true (called delusions) or see or hear things that are not really there (called hallucinations). Yes. I have since the age of about 7/8.
Ok. So we have a weak 4 here. Let's look at the Rethink website and their list of criteria, as it's worded slightly differently:
  • Extreme reactions to abandonment, whether real or perceived - Nope!
  • A pattern of unstable and intense personal relationships with others - Nope!
  • Unstable self-image or sense of self - Nope!
  • Impulsivity in at least two areas that are potentially self-damaging (for example, spending, sex, substance abuse, reckless driving, binge eating) - spending. I have been sober since 28th June 2012. I don't drive and don't binge and/or purge.
  • Recurring suicidal behaviour, gestures, threats, or self-harming - nope.
  • Long lasting feelings of emptiness - nope.
  • Inappropriate, intense anger or difficulty controlling anger (for example, frequent displays of temper, constant anger, recurrent physical fights) - nope. I can control myself.
  • Intense, highly changeable moods - My moods change, but it is  absolutely not daily.
  • Stress related paranoid thoughts - maybe?
All five must be severe for you to get a BPD diagnosis.
Swing and a miss, Mr. Psychiatrist. Once I get a copy of the DSM-V I will update again but I think we know that it's not going to match my symptoms.... at all.

It is very important to speak up if you disagree with your doctor. Talk to Mind and get an advocate. I'm considering that as an option myself. Also, it is your legal right to see your medical records. You need to apply in writing to the primary care trust. My application is in process now. I know that the only way this could have happened is if my notes are vastly inaccurate. It's not something I'm surprised about given where I was being treated before.

I know people with this condition. I know what it looks like. This isn't denial. It's just flat out wrong. Simple as that. I can't self-diagnose, but in the back of my mind I really wonder if I've inherited bipolar disorder of some description. I bet Mr. Psychiatrist hasn't even looked at my family history. The fact I respond to medication and function a hell of a lot better once the dose is right pretty much rules out personality disorder. It's not my fault it stopped bloody working!

Once I have seen my file I can go to the library and compile a strong medical argument against his lazy theory/impression of me. I will fight this to the end of time if I have to.


The University Diaries : coursework, ATOS and Lily!

Hiiiii! :)

I'm back with another update from the torture chambers of university... haha!

Yep. That's me in a lab coat. I frikking love it! :)
 It's not quite that bad but a few weeks ago it certainly felt like it. We've broken through 'the wall' and are now in the home straight. Everyone is in agreement that as long as I get my assignments in and make it to at least a few lectures a week then we're all cool. I can't begin to express just how much of a relief it is to have a mental health specialist advocating for me when she meets with the head of my school. The support at Sussex is absolutely incredible and I absolutely could not have made it this far without them. 

My exam dates have been finalized: 28th May, 2nd June and 3rd June. Lectures finish on 11th April so that's plenty of time to revise - thank god.

I have to commend the support of the mental health services here too; an absolute world away from where I used to live. You can tell where the funding goes... which makes me sad for the people trapped with a service barely scraping by and doing the best they can.

I've only had to file mitigating evidence for one piece of coursework for the entire academic year, which I think is pretty damn good going considering how rocky things were at times... and still are to a certain extent. 

I'm not well. But we knew that. The trouble is, we don't know exactly what the 'diagnosis' is. There aren't many conditions that encompass prolonged depression, severe anxiety, psychotic symptoms, dissociation and mood swings. I'm still waiting to see the psychiatrist, baring in mind I was referred in November '13.... In the back of my mind, after almost a decade in the mental health services, I think I know what s/he will say. This isn't me self-diagnosing, it's just a lot of experience, research and education, and joining the dots.

After so long, to finally have a name for the beast that has taken so many years away from me would be such a relief. If we know what it is, we can target it better, so I can live without all these restrictions. I'm not one of these people that lets a 'label' consume their identity. I just want to be 'well' again. I'm so tired of living in fear, questioning everything and clawing my way through the days. 

In other news: Remember my ATOS medical a month or so ago for ESA? I chased them up earlier on in the week, and it turns out that a letter is on it's way to me. I have been put straight into the 'support' group which I know is a rare thing to happen on the first time around. I'm relieved, but also saddened by it. Solid proof that I'm really not well enough to work. STILL. It's just.... ugh. 

There is a minor issue, however. I might be in the support group now, but I'm not seeing any money from it. The person I spoke to said I was only awarded national insurance credits. This happens when your contributions to the state purse aren't enough to get anything back out of it. In principal, fair enough, but what I don't understand is that people who have never worked get the payout and those that did then became unwell somehow can't. 

So. In this situation what you do is get a national insurance contributions statement from the HMRC. I need to find out what the 'cut off' limit is and see if voluntary contributions can release the benefit payouts. I know my contributions have been paid by incapacity benefit since 2009... It's so confusing and this system is ridiculous. 

Of course, as soon as I get any more information I will share it! 

 I will leave you with some pictures of Lily taking a giant step forwards in her harness training! :)

Disclaimer: before anyone gets all up in my face about having Lily on a harness, let's remember three things: 

1) She is a house-cat and has only experienced the outside world in her carrier or when she is in the cattery. 
2) She is 3 and a half years old. She has spent her entire life with me inside the safety of 4 walls. You imagine going outside after that long.... 
3) Harness training is not cruel. It is for her own safety, reassurance and sense of security. I even use an XS dog harness as the cat harnesses were too flimsy for her to feel safe in.

Bonus: We do not force her outside. EVER. She went out of her own accord with Alex holding her lead and seeing me in the garden so she knew it was safe. When it's just me and her, she won't move from the door so she definitely needs me out in the garden to prove it's safe for her. I try encouraging her by sitting on the steps but it's not enough at the moment. An extending lead is a bad idea at the moment as she would have the 'freedom' to run over a fence if she were to get spooked by something.



The University Diaries : dude, what the hell?

Oh gosh. Where to start?!

I am so, so sorry for vanishing off here and twitter. At the moment, it's just too much for my vastly over-exhausted brain to manage right now. I have a little bit of time today to check in and update on what's going on and when I'm likely to return. 

I know I'm only in my first year, and the level of stress I'm experiencing is probably way out of proportion to what the actual pressure I'm under is, but I can't exactly control what stresses me out... or I haven't acquired that particular skill yet at least! 

The end of February and the entire of March is coursework. Deadline after deadline. On 6th March I had 3 pieces due in. So far, I've handed in 1 of 3 from that set and even that was a day late. My other completed piece was 5 days late. So obviously, I'm struggling. It's not so much the work that's the issue, it's writing and getting the information out of my brain and onto paper in a coherent manner. 

For neuroscience I had an essay to write on Aplysia with a maximum of 800 words and no referencing as it was all from a paper. It took me a day to write 750 words, but almost a week to pull that out of my memory. Thankfully with neuroscience I already have a pretty good head start so that part is the least stressful of this year. Plus you always learn the subjects you love the easiest...

The problem is statistics and lab reports. I am flying blind and it is terrifying beyond words. I really enjoy being in the lab, but I am such a novice and it really shows. Cue lots of tears, stress headaches, IBS flare-ups and insomnia. 

I'm trying to pull my attendance up but thanks to chronic fatigue, it comes at a price. If I am on campus all day, I will come home and pass out for about 3 hours. When I wake up it is just impossible to function. Some might say don't let yourself go to sleep then; trust me, I've tried everything to keep myself awake but it is just impossible. I have had a couple of episodes of blacking out and near fainting which is a bit scary.

There have been some absolutely awful things happening within my extended family which I won't go into now in any great detail, but it has been a huge PTSD trigger and emotionally very painful to manage. This has definitely been one of the final straws in the amount of stress I can handle. It's woken up my addiction behaviours - because my stupid brain is still not working right - so now I have absolutely vicious cravings for alcohol and benzos, and urges to self harm. I haven't acted on anything, but it's there.... waiting to grab me and pull me back into the abyss.

The worst thing is just feeling so utterly lost and scared and overwhelmed and just..... I don't know what the word is. A pretty constant thought/feeling is that I am really not cut out for this and I should just quit now before I embarrass myself even more. I'm so, so stupid and slow and there's so much anger and feeling inadequate. I sit in the library and wonder what the hell I'm doing.

My CPN thinks this is a giant psychological block from my childhood, which is probably right, but what confuses me is that on an intellectual level I know that the bullshit I was fed back then was exactly that, but at the very root my being, it's still there and I don't know what it's going to take to make it go away. People that tell me I'm doing great and coping incredibly well just make me angry, which again pretty illogical.

So in a nutshell, my emotional state right now is far from stable. I know I'm withdrawing and I know I am depressed. There are just 5 weeks left of school before the summer break starts - which feels as ridiculous as it sounds - so then it's a few weeks of study before exams, but the dates haven't been released yet so that part is very up in the air. 

It is getting harder and harder to keep dragging myself along, but so help me God I am not ready to quit just yet. The sad thing is, I need every single piece of energy I have to claw my way through these final weeks so sadly things like my blog and keeping in touch with the world on twitter is just using brain power I don't have. This first year really has been a pretty brutal one!

The plan is, from the middle of April I should be fully back to normal service and pouring my efforts into making the blog even better. I'm totally open to guest posts so if you fancy it, just drop me an email! 

In the interim, I am working with my CPN to keep myself as safe and stable as possible. My mentor is helping me keep on track with attendance, planning and all things school related; and the boyfriend is enduring a lot of tears but has been an amazing source of strength and support.

Thank you all for sticking with me through this and I'm really looking forward to getting back to the quiet days of twitter and blogger!

Samantha Nicholls. Powered by Blogger.


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