The value of persistence

A while ago I posted An open letter to the Mental Health Community arguing that when confronted by a person with both autism and mental health difficulties, they found it all too easy to fob us off to the Learning Disabilities Team without properly investigating our problems. The specific cause of that letter was their refusal to see my wife, despite her deteriorating mental health, because of her autism. Hardly a stellar job of ‘care in the community’.

While not deigning to see her, they did, in absentia, recommend the GP put her on a second antidepressant in addition to the one she was already on, which caused her mood swings to become even more wild, and resulted in massive disruption to our home life without any follow-up. So my wife stopped taking all her antidepressants, and things got even worse. Again, a signal failure of the Mental Health Community to provide much-needed help and support to a person (and family) in distress. (Learning Disabilities, by the way, refused to see her because, apparently, her IQ is too high. So where exactly do people with autism go to get specialist help?)

I will be honest with you – thanks to my wife’s unstable, abusive, and downright crazy behaviour, her unwillingness to address her issues, and our increasingly fractious relationship, I have seriously considered walking out and taking the kids with me. It has been a year of absolute hell, and there is not one person I’ve spoken to who thinks I should stay, and fifteen or so who have told me I should go.

My response has always been the same: I want to make sure I’ve tried everything to make it work before I go so that if one day my kids ask me if there was anything more I could have done, I can honestly say no. People tell me I have passed that point, but I do not need to justify it to them, only myself and my children. But it has been far from easy.

Unwilling to give up and convinced there was more going on with my wife than simply autism, I read everything I could about developmental disorders, learning disabilities and mental health issues, until I eventually came across something called Emotionally Unstable Personality Disorder of the Impulsive Type. Of the five criteria in ICD-10, my wife fit all of them, and you need three for a diagnosis. Of the nine criteria on the NHS website (five required for a diagnosis), she fit eight.

Her impulsive behaviours without any thought of the consequences, her self-destructive tendencies, her mood swings and emotional overreactions, her uncontrollable behavioural explosions, her lack of opinions and minimal sense of self, her terrible fear of abandonment, her need for continual reassurance, her turbulent interpersonal relationships, her refusal to follow through with anything that doesn’t give instant gratification, her ‘zoning out’ whenever anything ‘difficult’ is discussed, her hypersensitivity to perceived criticism, her paranoia at times of stress and break from reality when she is highly emotional, her profligate spending, her binge eating, the fact she swings from obsessing over me to hating me, and that she can never be relaxed or comfortable – it all fits EUPD.

And it’s hardly a new thing – her school reports aged five, six, seven say the exact same things: gives up on anything that’s hard; does not apply herself; struggles to control her behaviour; will not take instruction or correction; retreats into her own world and is unreachable; does not mix well with the other children; terrified of failing; requires constant reassurance; moody; angry; difficult.

Armed with this knowledge, I wrote a document outlining all the symptoms and diagnostic criteria of EUPD, and all of my wife’s behaviours that fit these conditions, and examples of each. We then went back to the doctor, who again referred my wife to the Community Mental Health Team, and attached this document. Lo and behold, they agreed to see my wife this time.

She saw them today with her Care Manager. Yes, they said, she almost certainly has Emotionally Unstable (Impulsive) Personality Disorder. They are referring her to a specialist to diagnose her and giving her twelve weeks of CBT. It is a lifelong condition and they will work with her. Thank goodness.

I suppose I should be relieved, and thankful. But here is my issue: I am not a doctor. I am most certainly not a psychiatrist. I am in no way a mental healthcare professional. So why the hell was it down to me to investigate, research and suggest a potential diagnosis? Why on earth did I have to fight and struggle and browbeat and beg and eventually find the answers for myself before anyone would see us? And why, if it’s so plain she has a personality disorder, has it taken until she is 32 years of age for someone to spot it? Not to mention that if they had seen her seven months ago, it would have saved my family a shitload of soul-searching, heartache and pain. Seems to me there’s not that much ‘care’ in healthcare.

But at least this shows the value of persistence. If at first you don’t succeed…do their job for them.

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