take your ableism and get in the bin.

Ableist stories and examples

 

CN: talk of suicide, bullying and abuse

Yesterday I was subject to the most gross ableist attack by someone I had thought was a close friend. In her words, she accused me of ‘using my illness to get everything’. She was seething with vitriol, practically spitting the words.

I presume she meant that by having comorbid diagnoses of Bipolar II and BPD, I’m somehow able to swan around my penthouse suite that my oh-so-fortunate disability has ‘won’ me, being attended to by vast swathes of semi naked servants who are wafting me with gold plated fig leaves. When I get bored of swanning, I can go out to my high-powered job that I’ve managed to snag by virtue of being mental, because mental people get all the best jobs, don’t they? Then I can come home to my loving husband, children and stable family life.

No.

Just, no.

I have HAD it with pathetic and nasty jealousies, of oppression one-upmanship and everyone staking claim to some disadvantage more than others. I am sick to the back teeth of having to justify how fucking difficult my life is to people who should know better. Of having to justify the money I live on to people who are able to earn themselves a living in a way that I cannot, as hard as I have tried. Why am I constantly having to demonstrate my illness to people who claim to be allies?

If you have a problem with me, speak to me. We’re not twelve. Or if you don’t want to speak to me, get the hell away. Don’t stick around pretending to be nice, take take taking my emotional energy, telling me I’m so great, all the while seething your festering resentment. It’s childish and deplorable and it’s called gaslighting. If you really think that I get so many advantages because of my physical and mental illnesses I wish to god you could walk in my fucking shoes for a day. Actually, you’d be unlikely to even put them on, since I can’t leave the house alone. So privileged, much advantage.

You can dislike me. You can dislike my behaviour. You can refuse to accept my profuse and multiple apologies for acting like a dick when I’ve been unwell. But know that when you attack me for my disability, that is ableist behaviour. You are exercising your power to attack someone disabled for their disability. If you want to do that, know that you are ableist.

Ableism example

When you attack someone with BPD who already has constant suicidality and a fucking ruptured and fragile sense of self, know that you are knowingly causing harm beyond what a non-disabled person would experience.

When you accuse me of using my illness to bully people and get what I want, know that you’re silencing me from one of the few outlets I have – to speak about my illness, my disability and the structural oppressions I face.

When you say to me that I use my disability to bully people, I hear that you actually don’t believe it’s a disability at all. If you’re not prepared to accept the very few and limited occasions that my illness has made me act like a dick (obviously I’ve acted like a dick on many many other occasions, completely unrelated to any mental health diagnosis), and you’re not prepared to accept my apologies or reparations for that shitty behaviour, then really you should not enter into friendships with disabled people. Because you’re giving us the false impression that you might, you know, actually show some empathy and understanding.

But that’s just me expecting special treatment.

Ableism story

Further reading: this is a nice quick blog about the behaviour of people with BPD.

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A Literary Life

I’ve been mentally troubled for a long time and began self harming when I was 13.

My parents referred me to the Children’s mental health service in Sheffield, but despite the psychiatrist telling me I should be admitted to their adolescent unit nothing ever happened. I’m not sure if the referral got lost or my parents quashed it.

I was started on antidepressants at 15 and have been on and off them since. But this blog isn’t about medication, or psychiatry. It’s a journey of my mental illness through the books I’ve been recommended over the years.

My periods of depression  became really noticeable when I began work in about 1995, and after revealing my concerns my GP recommended Overcoming Low Self Esteem, by Melanie Fennell. IMG_6760

It had some useful information but didn’t help with my depression.

A couple of years later I returned to my GP for help. By this time (around 1998) the mania for CBT was sweeping the nation, and I was prescribed six sessions and this workbook:

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In fact, one of my psychologists was so evangelical about CBT that after one hospitalisation she bluntly told me that if I was still ill ‘it was because I wasn’t doing it right’. Not that I had untreated bipolar or anything.

Whatever, the black dog continued to follow me. After a complete breakdown whilst at uni in 2005, I finally received my diagnosis of bipolar, and was given this to read – I would highly recommend, incidentally, both for sufferers and friends and family.

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My (private) psychiatrist was the first person to really treat me as an intelligent equal in our dealings, and as a result he suggested I buy this weighty tome:

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It was pretty pricey as I recall, the flyleaf says $65, but I got a lot out of it. Although it’s written for clinicians, each case study has a ‘takeaway’ summary at the end so you can get the gist. Invaluable for finding different treatment combinations – and if you’re paying a private doctor I would rather be doing the reading on my time than his.

On the subject of bipolar I should also mention this autobiography by Kay Redfield Jamison, who is a clinical psychologist who herself suffers from bipolar. It was one of the first books I read that made me identify with her symptoms and wonder if that was me, too.

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After a few years respite, in 2012 I deteriorated following the death of my mum and the strain of being the sole carer for my grandma. I tried (repeatedly) to commit suicide, and whilst in hospital was seen on a psychiatric ward by a locum doctor. I had never seen her before or since. However, she immediately rubbished my bipolar diagnosis and said I quite obviously had Borderline Personality Disorder. Whilst in a recovery house post-hospital, I read this book, which again I’d recommend:

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It was hard to shift my mindset from believing for such a long time that my mood state was caused by neurological imbalances, to believing that my illness was a series of maladaptive behaviours brought about by childhood trauma.

I didn’t dismiss the diagnosis – I recognised lots of patterns from the book that had played out in my own relationships. My issue with BPD was then, and has always been, a tendency to pathologise normal behaviours. If someone has a stressful day and comes home and has a glass of wine this is normal, but if a BPD sufferer does the same they are ’employing a maladaptive coping strategy’ to deal with their feelings, and should actually go and sit in a field meditating instead. Humph.

There being no NHS treatment for BPD in Sheffield, the hospital recommended this workbook and thusly discharged me, duty of care completely fulfilled:

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It’s not a bad book and I did learn a lot about using ‘healthier’ coping strategies.

When I came to London in 2014 the debate raged on as to if I had bipolar or BPD. I was ‘streamed’ into the BPD service as I was told I couldn’t be treated for both, it was one or the other. I was told that the Personality Disorder service would offer more in the way of therapy whereas the Bipolar team mainly focused on medication. From experience I know that the NHS relies heavily on older, cheaper bipolar meds such as lithium and antipsychotics, which can severely limit normal functioning and have severe side effects. My psychiatrist told me this week that 45% of the bipolar population have type 2 diabetes (compared with around 9% in the general populace).

So, once I was under the Personality Disorders Unit I endured a year’s wait for my therapy – originally planned to be Dialectical Behavioural Therapy as in the workbook above, but eventually, in about 2015, decided to be Schema Focused Therapy. Here’s my reading list for this one:

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Look at that title. Victim blamey somewhat? So, you’ve gone through trauma but CHEER UP you negative Nelly else it’s your own fault you’re still poorly.

My schema therapist was lovely, and I tried hard. I understood that the one of the principles of psychotherapy is that you have to get worse before you get better, but I got worse. And worse. And worse. After about eight months I was a mess, and we decided to call it a day.

I was referred back to the list for Dialectical Behavioural Therapy.

It’s hard to explain what went wrong here except for the fact that my therapist had the empathy of a block of wood. She was impossible to establish any rapport with, and as a result I found it incredibly hard to open up. When I tried to raise this with her I was told that it was her or no-one, and when I complained to her manager, I got nowhere. The following month, I learned they had both left the service to set up together in private practice.

There followed a year without treatment. With rapid cycling of moods, extreme anxiety, agoraphobia (I booked a trip to Edinburgh to the festival and locked myself in my rented flat, never seeing one show), the only thing that kept me going was my substance misuse worker. I’d originally been referred for help with drinking as I was drinking heavily to cope with my moods and this often precipitated a suicide attempt. After about four months of seeing my worker, she said i no longer had a problem, but we carried on seeing each other because she knew I was getting no therapeutic support.

All the good ones leave, and in June 2017 she sadly she went off to work for another trust. My condition deteriorated rapidly. I was self harming, never leaving the house, not even washing, and having flights of mania within all this. I was (and remain) like a butterfly trapped in a lighbulb.

I took the only remaining option and went to see a private psychiatrist. Within less than two minutes of seeing me (and assessing the questionnaires I’d completed in advance) he diagnosed me with mixed affective state bipolar. I was back where I’d begun.

Mixed affective state bipolar is not the same as bipolar one or two, so I was given further reading to try and understand my condition. Today’s book:

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To be frank, whereas I eagerly attacked most of the other books, desperate to understand the hell I was going through, with this one I just feel tired. I feel like I could see 10,000 different psychiatrists and get 10,000 different answers – each one swearing that their predecessor had it utterly wrong.

But for now, it’s what I have.

Something of a Car Crash

A mental health patient explains the frustrations of trying to convince doctors that her illness is biological, rather than caused by a bad night’s sleep, a row with her boyfriend or her menstrual cycle.

The other day I bought a new car. It was a lovely car, but it had a design fault, quite a serious one. Whilst driving along a straight piece of newly-tarmaced road one day, the brakes failed, causing a nasty accident (no onlookers were hurt).

I took the car to a mechanic who confirmed that the brakes were faulty. However, In the weeks following the accident I had to have a series of conversations with the police, safety experts and insurance specialists who were investigating the accident.

The conversations could be summarised like this:

Official: So madam, what do you think caused the accident?

Me: The brakes failed. I have a comprehensive statement from a senior mechanic, confirming that brake failure was the cause.

Official: Yes, but let’s look into this in more detail. Was there perhaps a pothole in the road?

Me: No. The road was newly tarmaced, and in any case, it was the brakes that failed.

Official: I see there are large trees in the area. Leaf build up from overhanging branches can be an attributing factor for car accidents.

Me: It’s the middle of summer, there is no leaf drop. And I think I mentioned, it was the brak-

Official: (interrupting)  It’s currently Ramandan. Fatigue caused by fasting can cause one to lose concentration on the roads…

Me: I’m an atheist. And so is my husband, who was driving the car at the time of the accident.

Official: And how is your relationship with your husband?

Me: IT WAS THE F**KING BRAKES

This is what it’s like trying to explain to health professionals that your mental illness has a biological, rather than a psycho-social, cause.

For the record, I have a dual diagnosis of Bipolar Disorder, which is mainly considered a physical/biological illness, and Borderline Personality Disorder, which is frequently considered to be caused by, and influenced by potholes ooops I mean environmental or social factors. In my experience there is a massive reluctance on the part of the NHS mental healthcare side to accept that sometimes mental illness isn’t attributable to social factors, and is just caused by my brain’s fucked up chemistry.

  1. This website is helpful if you want to know more

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No doubt others will have different experiences.

This is how it feels.

Are you one of those folk who ‘don’t really understand’ mental health problems? Pull up a chair, my friend.

IMG_5762I am terribly, terribly sad and nothing is making it go away. I know people say that they can’t really understand what mental health problems are like if they haven’t had them – well please allow me to illustrate my example.

A few years ago, I lost my mum to lung cancer. We were close and I very much looked up to her. I thought her death would be the very worst thing that could ever happen to me, and it was pretty horrific.

The way I feel now is worse. With no reason. No bereavement counselling, no reassurance that I will work through ‘stages’ to recovery, no concerned relatives and certainly no fucking flowers. Just a terrifying feeling of darkness, worthlessness of myself and everything around me.

My mental health nurse has moved on to another job and I won’t get another, because the NHS has no money and they have to focus on the people actively taking overdoses rather than the ones fighting the urge. My Personality Disorder psychiatrist  sees so many chaotically ill people – emaciated, angry, covered in scars and cigarette burns – that he understandably says I’m ‘doing well’. I get where he’s coming from, but it’s cold comfort.

I’m so grateful to my friends for sticking around the bundle of definite un-fun that I am. My best mate tells me this will pass, and I have to listen to him. It’s all I have to hold on to.