When your Grandmother unknowingly Stigmatises You

(CW: mentions self harm)

Something weird happened to me earlier. I have an interview with the charity Rethink Mental Illness next week to apply for a role that acts as a sort of young people’s advocate especially with a Young Offenders Project. I was explaining this to my grandmother whilst we were sitting down after lunch when she said:

Oh Beth. Really? Ok the young offenders who go around bashing cars and the sort- fine help them but the ones who (making a gesture) sort of slash up and down their wrists…stay away from them- they are just too complicated.

It was obviously quite an awkward and painful moment for me, I just nodded my head a bit dumbfounded realising she has no knowledge of my self harm and really, why would she? She not only regarded self harming as something young offenders do but also warned me to stay away from these complex and mysterious people. My first thought was of what horror she would feel if she saw my own arms, something I mistakenly felt she would understand about eventually. The sad realisation that that would be  best avoided at all costs.

However, this shouldn’t really surprise me I think it is only that as I get older I am becoming more aware of my previously idolised grandparents’ weaknesses and frailties, in particular my Grandmother on my mother’s side as she is the only one still alive.Despite her own serious dealings with mental illness, including two or three hospitalisations, she still has a very backward understanding of mental health and ill- health, and she is of her generation in that. Another similar, less directed, event relating to this happened on a walk with her and my uncle last week. She referred to a relative who had ‘you know gone odd’ whilst my uncle explained in my other ear that he was severely schizophrenic.

I love my grandmother very much but her attitudes towards the topic alarm me and act slightly as a stab in the chest each time. I’ve learn how now to cope with mental illness from her unfortunately as she has cut herself off from the world in a sense becoming incredibly selfish and insensitive, acting out often against my mother as a way of defusing her own insecurities- which I doubt works very much. This said, I won’t show her my scars  not only because of her judgements but also because I see no point in adding to the already great burden of old age and furthermore to the pain I know she buries deep in her belief that she is to blame for passing on the ‘tortured mental’ gene to me.

Personality Disorder: The Issues

In this blog I am going to write about just some of the issues within the NHS to do with the various Personality Disorder diagnoses, that affect how these illnesses and the people with them are viewed both by professionals and themselves. If you have any other experiences of problems like these that I haven’t mentioned please do comment below as this is a hugely important topic. Within the psychiatric body I believe there are many contradictory, incorrect and ultimately harmful opinions surrounding Personality Disorders and as a person diagnosed with one I have found the process of navigating my way through the bias and misunderstanding towards a solid, evidence-based understanding of what my and other PD diagnoses mean very difficult…Let alone how I’d managed to end up with a label that seems to suggest my very character was flawed enough to be ‘disordered.’ For more information about the different diagnostic cluster and Personality Disorder diagnoses click this link

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And that introduction brings me to my first point, the name they are given:

PERSONALITY DISORDER

What first strikes you about that label? Is it not, at very least, mildly offensive? This key concern has the potential to be severely damaging considering many people being diagnosed with PDs, particularly clusters B and C- Borderline, Histrionic, Aviodant and Dependant, may already see themselves as weak, valueless and without identity. Part of these disorders is to feel these things and feel the need for the approval of others also, so then being told by an authoritative figure, what could be understood as, your personality/character is the reason behind the immense suffering you’re going through….surely that is a recipe for disaster? What could make a person feel any more hopeless than that? ‘Essentially, Miss X you’re character is the issue, sorry about that.’ I believe an alternative name would be more appropriate and would reduce the chance of self-stigma and despair upon diagnosis. I have come across terms such as ‘Complex Needs’ and ‘Persisting Symptoms’ being used instead but, really, one needs to be developed by professionals.

Then to expand on this further ‘Borderline Personality Disorder’ is a label many have flagged as being utterly misleading. Is it almost a PD, what is it on the borderline of exactly? Originally, the answer to this was neurosis and psychosis, however, this has now been disregarded. Personally, I prefer the British term Emotionally Unstable Personality Disorder, as harsh as it sounds- it ‘does what is says on the tin’ (unfortunately.) I’ve also heard Emotional Dysregulation/Intensity Disorder being used- these clearly explain much of the issue, however, within the mental health world the Borderline still rules the day and very few would recognise those alternatives. The thing to stress at this point is that these diagnoses are just, like any other illness, a label- a ticked box for those who describe themselves as having the majority of these symptoms. That doesn’t mean they are all alike nor does it mean they are different from who they were pre-diagnosis and, as always, the person should be treated not the diagnosis and the person should be treated with respect.

As my friends at Monarch Butterfly explained

My second point is that many still regard personality issues as solely ‘behavioural.’ This is, again, misleading and leads to untrained (or badly trained) professionals seeing those diagnosed with PDs as ‘causing problems for no reason’ and just ‘needing to take more responsibility,'(both of these are from personal experience.) This is torturous to listen to, imagine hearing this whilst hopeless and in so much emotional pain you feel the need to self harm and/or take your own life- plus, from the studies I’ve seen, this view is factually incorrect. According to Dr Marsha Linehan’s widely accepted BPD bio-social theory, there is a biological disposition, a genetic factor, to developing BPD and since then studies have shown brain differences in those with PDs, with various areas underdeveloped.

Furthermore, regarding Cluster A Personality Disorders, symptoms can be longstanding magical thinking, delusions, paranoia and disorganisation/catatonia, all also regarded as common signs of schizophrenia. Schizophrenia is seen by most as ‘a disease of the brain likely relating to levels of dopamine,’ so why then are the same symptoms, when given a different label that represents how they effect every area of that person’s life, seen as purely behavioural? Psychiatrists and psychologists need to come together to address this issue. And this is not an individual case. Concerning Borderline or Emotionally Unstable Personality Disorder, many don’t even see the Disorder as an illness. Moreover, aids to recovery are extremely set in stone.You go to a doctor with a diagnosis of BPD and the first thing they are likely to say is ‘according to NICE Guidelines (whenever you here this start to a statement cover your ears: my hatred for NICE is deep-seated) medications will be useless to you,’ despite this many, myself included, are given mood-stabilisers, antidepressants and anti-psychotics. ‘Only therapy can help you’ (which is often not even offered but that’s a blog for another time.) Now go to a doctor with Bipolar Affective Disorder Rapid Cycling or Mixed State on your medical notes, and this time, ‘medications will be the only solution for you- trust me, I’m a doctor.’ These illnesses are on a similar spectrum, mood instability-wise, as this psychotherapist tweeted:

Every case is unique but most with either disorder will need a complex combination of both therapy and medications but it is so much easier for health professionals to resort to black and white ways of thinking (those with any of knowledge of BPD will see the irony in this.) And that brings me onto my final point- like Bipolar Disorder and Schizophrenia, Personality Disorders are serious mental disorders. This can be seen, simply, in the figures. About 60% of those with PD diagnoses will have a comorbid psychiatric disorder. 1 in 10 people with BPD die by suicide- giving it one of the highest suicide rates of all mental illnesses. BPD alone accounts for an estimated 20% of all hospitalisations worldwide and unfortunately there aren’t statistics for other PDs but it is considered to be high. Furthermore, up to 90% of all prisoners in a recent global study had some variant of PD. These disorders, by definition, have to be persistent and debilitating. And as a result of this, problematic and costly to society- taking them as a joke or with any less severity than is the truth will not be helpful to anyone. This does not mean recovery is not possible, by any means, but it does mean recovery by learning to manage and treat the symptoms is very hard work both for the individual and the professionals working with them. Therefore, the UK needs to catch up with Europe, North America and much of Africa in recognising it for what it is, a ‘Serious Mental Illness,’ both in literature and on the frontline among policing, nursing, social care, psychiatric and psychological professionals. And all these issues affecting people living with a PD, and their carers, must be addressed if the country, as the government said in 2003, is truly treating Personality Disorder as ‘No Longer a Diagnosis of Exclusion.’

Fall Seven Times, Stand Up Eight (and ignore the idiots)

Hello all,

I am currently sitting in Costa, the furthest distance I could get out of my house, forcing myself to write this as I know it is often helpful and therapeutic- a reason why I believe there will never be enough mental health or any kind of blog. In fact, I was very interested in a blog I came across the other day, in which a man wrote of his life with a peculiar addiction to sardines…we all have our quirks.

After a quite an adventurous previous few weeks of media appearances and visits to friends, I completely dipped this week. I don’t really know why, my mood fluctuations are a complete mystery to me and I have to either see them as completely unbearable or hilariously ridiculous- or if I’m able both (I suspect the reality.) It has probably been a combination of hormones, a disastrous transition between services in which people are having to get a legal advocate involved, and exhaustion as a result of lack of sleep.

I have been very close this week to being admitted to hospital for a third time which is pretty scary, but I have to face up to the reality of the situation. What I experience, sometimes not always, really is madness. Personally, I don’t find it offensive being called ‘mad’ because feeling reasonably okay one minute and torturously suicidal the next with no fathomable trigger, seeing people that aren’t there and hearing a voice that tells me I’m pathetic for not being more unwell or dead is what I understand as madness. It’s all completely illogical and confusing- I’ve had to delete my Facebook account as I was convinced one night people on it were plotting to kill me- mad? And I’ve been told I walk and stare differently when more unwell. It takes your functioning mind, plays with it cruelly- putting your life at risk, and then when/if things improve leaves you like a piece of paper screwed up to unscrew yourself and get up again.

That said, despite the lying voice, I still believe

“One Day at a Time”

“Fall Seven Times, Stand Up Eight”

One person may get a lot more done during the day, but I am proud when I struggle to even think how I’m going to walk to my cupboard and I can go out and buy a crossword magazine. That’s an achievement for me and I’m guessing would be for a reasonable number of people suffering with severe mental health conditions.

Furthermore, those of you who believe me to be pathetic or who believe stigma of mental illness no longer exists (I was told this by a psychology teacher recently) I would like to ask if you have ever been spat on or restrained- I have, it is the most degrading, horrible experience why would someone put themselves through this purposefully? Would someone be spat on for being diabetic or blind? I don’t think so, and if they are, for god’s sake it’s as wrong and sick as people being spat on for being mentally unwell. It’s the same as how dressing as ‘mental patient’ is wrong, stop dressing as me for Halloween! And if you feel the need to, please do it more correctly- I’m a 5ft 4 chubby brown-haired girl, no straight jacket, no spitting mask. Both, dressing as a patient with ebola and schizophrenia is unacceptable. There is a line where a dry sense of humour should end. Stop.

All this does is convinces a person suffering that they re even less worth trying to recover than they already believe. I don’t believe reducing a person who’s sense of dignity and their own value is already fragile, is ever okay whether through bullying, manipulation or discrimination. Don’t believe these people- confront them when/if you’re able to, but for now ignore them and move on.

And you know what, this has been to me helpful again. Getting my views and frustrations out and being able to explain to people where I’m at is a relief. Thank you for reading this and I’m genuinely interested in whether you relate/disagree to any of these experiences, let me know (unless your that idiot psychology teacher…sorry I have a line too.) And to those of you really struggling whether with study pressures, mental or physical health problems and who feel like they’ve fallen- “Fall Seven Times, Stand Up Eight”- “One Day at a Time.”

Peace x

http://www.time-to-change.org.uk