Day 06: What do you wish you’d known when you were diagnosed?
Nearly two years ago I attended an event in aid of Mental Health Week. Prior to a screening of (the excellent) Silver Linings Playbook, three nervous individuals took to the stage to talk about their recovery journey in front of one hundred and thirty expectant people: I was one of those three individuals. The speech I delivered was based from a blog post I had written, namely a letter to my younger self, that delivered sage-like advice about my impending bipolar diagnosis. As today’s prompt in the 31 Days of Bipolar Challenge is asking for a similar diatribe, I have decided to link to this post and urge everyone to read the letter I read out to those one hundred and thirty people, for it is a piece of writing I’ve always been proud of, and one of my personal highlights of this blog.
But, it feels a bit odd (and like I’m cheating) to be answering a prompt with a simple link to an old (albeit excellent) post. So for people craving new and invigorating content, I present a postcard to my younger self that answers today’s prompt as simply and directly as possible:
Most people who I’ve spoken to that are afflicted with bipolar have a psychiatrist monitoring their progress, medication and moods. In fact, I would go so far as to say that having a psychiatrist is pretty much a prerequisite for someone suffering from an illness as serious as bipolar. However, as the last appointment I had with a psychiatrist went so badly, I no longer have any trust for people in this particular profession. Thus, I am left to navigate the ups and downs of bipolar all on my lonesome.
But that doesn’t mean I don’t undertake treatment, I do, and here are six examples to prove it:
Medication
First and foremost, there is medication, something that pretty much everyone who is diagnosed with bipolar has to contend with. I say contend with because some of the side effects of psychiatric medication can be pretty brutal, as I discovered this year, but regardless of these side effects, medication is quintessential for dealing with bipolar.
At this point in my life my medication regime is: an antidepressant (Fluoxetine, 40mg/daily), an anti-psychotic (Solian, 100mg/daily) and a second anti-psychotic (Abilify, 10mg/daily). For those who have some knowledge of bipolar, or medication in general, you will notice something pretty obvious is missing from this chemical cocktail…and that is a mood stabiliser.
I had been taking Sodium Valproate (aka Epilim) at 1000mg/daily, but this was immediately cessated in January 2015 after it caused a particularly nasty bout of acute pancreatitis that saw me hospitalised for two and a half weeks. Since then, I have had numerous conversations with my GP about starting an alternative mood stabiliser, as my mood as been rather unstable over the last three months. He ruminated over starting me on Lithium, a drug that works exceptionally well for me, but because it negatively interacts with the Fluoxetine he decided against it. Whether or not I will ever be back on a mood stabiliser is beyond my control. Personally, I would be happy to stop the Fluoxetine in favour of Lithium, but my opinion is neither here nor there. All I do know is that without a mood stabiliser, my moods will continue to fluctuate wildly, and it’s doubtful I will be able to stabilise myself, regardless of how many anti-psychotics I’m taking.
Support Worker
My only form of real-world contact comes from the weekly appointments I have with my support worker. In all honesty we don’t do all that much, mainly because my anxiety prevents me from opening up to her. So our appointments are basically her battling to get me to say anything whilst occasionally recommending a particular course of action for me to take.
This is yet another example of how my anxiety impacts on my life. It would be wonderful to have an open and honest relationship with my support worker, but no matter how much effort I put in toward achieving this, anxiety rears its ugly head and prevents me from saying anything. It’s frustrating. It’s annoying. It’s all manner of badness. In fact, more than anything, it’s gloriously ironic. Here’s a person who could potentially help me manage my anxiety, but I can’t talk to them because of my anxiety. Grrrr!
Talking Therapy
Okay, I’m being a little cheeky here. As I write this I’m not technically undertaking any form of talking therapy. I don’t have a counselor. I don’t have a therapist. I certainly don’t have a psychiatrist. But I am hoping that I will soon have a psychologist with whom to examine the intricacies of my life.
During my last visit to my GP I informed him of how difficult it is to deal with my anxiety, to deal with my PTSD and to deal with the fluctuations of mood that bipolar causes. He suggested I see a psychologist (it’s been several years since I last saw one) and dutifully referred me to someone.
I’m still waiting to hear from them about my first appointment (if I haven’t heard by tomorrow, I’ll be calling them next week) so will keep you abreast of developments in this area of treatment.
CBT and DBT
Without someone to help me with these forms of therapy, I am left to navigate them all on my lonesome. This may sound difficult, and it is, but I have a number of books on both subjects that have helped me understand the basics of each form of therapy and allowed me to partake in them as and when I’ve been focused enough to do so.
I have to be honest, I am hoping that the psychologist I’ve been referred to will be a practitioner of DBT, as I believe it would be of tremendous value to have someone assist me in working through this particular form of treatment. Fingers crossed!
Acceptance and Commitment Therapy
This is something I’ve been practicing since I first learned of its existence in 2013. Back in that heady year of mayhem, busyness and fun I undertook an ACT based psychosocial rehabilitation group and learnt many of the exercises and metaphors that populate this method of treatment.
Some posts I’ve written on Acceptance and Commitment Therapy (in case you were interested!):
Although my blogging isn’t as prolific as it was in 2012-2013, it is still one of the primary methods of therapy that I undertake. There is something gloriously cathartic about writing about your life, feelings, emotions, moods and thoughts before sharing them with the world. Even if no-one reads, likes or comments on a post, I am still proud of myself for having the courage to put it out there in the first place, especially as my anxiety often interferes with my blogging and works to prevent me from posting anything at all.
Day 04: How do you feel about people who diagnose themselves online and then treat themselves for bipolar?
Without trying to sound arrogant, or nasty, or anything else one might call someone who insults others, I think people who diagnose themselves as bipolar are idiots. In fact, I would go so far as to say anyone who diagnoses themselves with any illness (be it mental or physical) is an idiot. For you simply cannot diagnose yourself; that must be left up to a trained – impartial – professional.
Granted, some trained professionals are wankers (as we discovered in my last 31 Days of Bipolar post), but the majority have people’s best interests at heart, which is something that cannot always be said about ourselves. In fact, sometimes we are so desperate to ‘explain’ our behaviour with a medicinal label that we leap to the worst possible conclusion.
Many years ago, when I was but a humble teenager, we had a book in the family that I believe was called the “Family Doctor”. This book contained a number of flowcharts for every possible condition which could be afflicting someone. For example, if you had a headache you looked up this symptom and followed the yes/no questions along the flow chart; each question either eliminating or pointing toward a particular illness. So when I began suffering from a simple headache, I would pull out the book and begin answering the questions, which would usually lead to me being diagnosed with the far more serious (and most unlikely) brain tumor. The same went for every symptom I looked up; toothaches led to mouth cancer, a chesty cough meant emphysema and a pain in my arm usually meant I had suffered a fracture of some description. Whereas in reality, I wasn’t suffering from any such thing, I was just suffering from a relatively minor health condition that I believed was something far more serious that it actually was.
The same scenario is now being played out in households across the world, courtesy of Doctor Google, as it’s human nature to seek out the worst possible scenario to explain away simple conditions that, usually, don’t even require medical treatment. The same goes for mental illness. People seeking out the worst possible outcome to explain their behaviour and convincing themselves ‘this is what I suffer from’ when in reality no mental illness exists. Or worst, diagnosing themselves incorrectly and thus medicating themselves with damaging and dangerous psychiatric drugs.
Of course, there is also another set of people who diagnoses themselves online, and I hold these people in such low regard that there isn’t even a word to describe it. And these people are the ‘fashionable diagnosers’; people who diagnoses themselves bipolar because they believe it fashionable to be suffering from such an illness. Perhaps “inspired” by the television show Homeland, or the latest exploits of their favourite celebrity, or a magazine/newspaper article that glorifies mental illness. These people simply want to be bipolar, whether they’re suffering from it or not, and if they were to suffer from bipolar, I would be willing to bet they wouldn’t want such a vicious condition ruining their lives, as bipolar is prone to do.
For me, it’s just wrong, and dangerous, to diagnose yourself. And it is even more dangerous to medicate yourself, especially given the brutal side effects that accompany most psychiatric medication. If you really think you have a mental health problem, forget Google, forget the “Family Doctor” book, forget what you read online; make an appointment to see a mental health professional and talk about your life in order to receive an impartial opinion on what may – or may not – be going on.
Catwalk size doesn’t affect anorexia as much as you think. (Republic of Korea, CC BY-SA)
France has joined Italy and Israel in passing laws banning the promotion of extreme thinness in the fashion industry. The health reforms, which include fining agencies employing models with a BMI under 18 and criminalising pro-anorexia web content, have now passed through the upper house of parliament.
An analysis of the reforms by Sarah Jackson on The Conversation suggested that censoring images of ultra-thin models may ease their adverse effects on young women, such as concerns about body image and behaviours such as unhealthy eating.
But while some have been hailing the legislation as a “crackdown on anorexia”, the laws may be unlikely to have any such effect.
Not a lifestyle choice
In western Europe, around 0.5% of adults are thought to be affected by anorexia nervosa. In around 10% of these cases, the sufferers are men. These figures, however, are likely to be an underestimation. It has the highest mortality rate of any psychiatric illness, mostly due to organ failure and suicide.
Yet, the illness is often mistaken by many as a lifestyle choice with an external cause. Despite accounts of the disorder pre-dating the fashion industry, the view that anorexia is caused by comparing oneself to a catwalk model remains popular. Likewise, while pro-ana websites insist that anorexia is a commitment, not an illness, they are highly exclusive online communities, created by and for those already showing signs of the illness. The merely curious are not welcome.
Instead, the link between media endorsement of extreme thinness and the development of anorexia is neither simple nor clear. Research mentioned by Jackson did find that women evaluated their bodies more negatively after viewing images of thin models. However, this effect was small and mostly determined by women’s pre-existing opinions of their figures – women who were already dissatisfied with their body were most affected.
Pre-existing opinions matter. (Joana Coccarelli, CC BY)
As this effect was only measured at one point in time, the effects of prolonged exposure are not known, but when more images were used there was a tendency for the effect to be smaller. Perhaps, as the authors suggested, these images activated, rather than cultivated, beauty ideals.
Whether the effects of media exposure on body dissatisfaction leads to changes in eating behaviour is also unclear. Another study, also cited by Jackson, looked for a link between a person’s real-life media exposure and eating disorder symptoms. The results were fairly inconsistent, with some factors – such as body dissatisfaction – only corresponding to some types of media, and others – such as self-worth – showing no relationship.
More importantly, the research showed correlation, not causation – it is just as plausible that women already unhappy with their bodies seek out thinness-promoting media more often. After all, if such a simple causal relationship did exist, the pervasiveness of these images in our culture raises the question of why the majority of our population is overweight, rather than underweight.
Model bans but no support
Most researchers currently view the cultural value placed on thinness as a “background risk factor”. Meanwhile, several psychological and biological factors are implicated.
High levels of perfectionism, a need for organisation and a focus on details are often observed in those with anorexia. Recent research suggests there is a lower reward response to food in the brain, even after recovery. Some of these factors seem to be influenced by genetic inheritance. Stressful experiences may then influence whether these existing factors then lead to developing the disorder. More than one risk factor will be necessary.
So the legislation is likely to have little effect on the prevalence of anorexia in the general population, but it also offers no support to the models themselves. The law requires a medical certificate proving that a model has a BMI of at least 18. This is still underweight, according to the World Health Organisation. Regular weigh-ins have been only vaguely suggested and there’s been no mention of an obligation to offer support to a model who fails a weigh-in.
A BMI of at least 18 is still underweight. (Fervent-adepte-de-la-mode, CC BY)
While there is some debate over whether models are at a higher risk of developing eating disorders, this career certainly encourages unhealthy behaviour. Thinness of this degree has hugely damaging effects on the internal organs, bones and brain. It can cause obsessiveness and social withdrawal even in psychologically healthy people. France has already lost a high-profile model to anorexia – yet the new laws almost encourage agencies to wash their hands of models who fall ill.
In the same way, while pro-ana content is undoubtedly harmful, the new laws punish those who are in need of help. This exclusively punitive approach is likely to drive these sites further undergound.
If the measures are enforced – if spot checks continue, weigh-ins aren’t cheated and other countries are supportive – they may be a positive move. They may be a first step towards a culture that prioritises health over aesthetics – whether that means a dangerously small or unhealthily large body. Nonetheless, this will mostly benefit the worried well – those who, regrettably, are unhappy with their bodies, but are otherwise unlikely to develop anorexia nervosa. Claiming that these laws address one of the most treatment-resistant mental illnesses is far too optimistic.
This article was written by Rachel Cole-Fletcher, Durham University
This article was co-written by Lexie Thorpe, an MSc in Developmental Cognitive Neuroscience at Durham University
Day 03: How old were you at the onset? How old were you at diagnosis? How were you given the diagnosis and are you satisfied with the way it was handled?
Unlike my depression, which began when I was thirteen, unlike my hearing voices, which began when I was nine, unlike my social anxiety, which took hold of my soul when I was fifteen, I’ve always found it difficult to pinpoint the exact onset of my bipolar. But when I look back on my life, I can’t help but focus on certain incidents that occurred during my teenage years. One such incident was when I ran away from home at the age of eighteen.
It was an incredibly spontaneous decision that had little to no thought behind it. One day I was happily house-sitting for my brother, the next I was sending a plethora of long, rambling letters to people I barely knew, the next I was on a train bound for Inverness. Once I arrived in the capital of the highlands I hiked twenty-six miles to the town of Drumnadrochit and spent the evening talking bollocks with complete strangers in a backpacker hostel.
A couple of psychiatrists I have seen have indicated to me that this was a hypomanic state; the grandiose plan, the excess of energy, the endless talking (both in person at the hostel and in the letters I wrote) and the complete lack of empathy toward members of my family who must have been worried about what had happened to me. If this was a hypomanic state as those psychiatrists believe then this was the onset of my bipolar.
If it wasn’t, because let’s be honest, psychiatrists are frequently wrong, then the onset of my bipolar began many years later when I was in my mid-twenties. This is when my moods began cycling quite profoundly (2006), this was when I first experienced a manic phase (mid 2007) and this is when I was first diagnosed as bipolar (late 2007, at the age of 27).
But looking back on my life, I personally feel the psychiatrists were right, and not just because of the running away incident. There were many other examples of my behaviour being ‘odd’ when I was in my late teens. Moments where my mood altered without cause or reason, moments of madness and insanity, moments that no-one in my life could explain. I lost friendships as a result of my behaviour. I lost opportunities as a result of my behaviour. I lost jobs as a result of my behaviour. However much people have tried to convince me otherwise in the intervening years, I am adamant that my bipolar began at this stage of my life, rather than years later when I was in my late twenties. But psychiatrists (and myself) still insist on debating the issue of onset of bipolar for one reason and one reason only: I have never been hospitalised as a result of my mental illness.
The last psychiatrist I saw, in late-2011, told me in no uncertain terms that I “was not suffering from any mental illness”. In fact, he even stated that (and this is a direct quote) “you are play-acting mental illness in order to escape homelessness”. His reason for believing this relied solely on the fact that I had never been hospitalised. Not when I was manic. Not following any suicide attempt. Not when my moods were rapid cycling and my behaviour was beyond ‘normal’. In fact, I can personally think of at least six occasions in 2007 alone that I should have been hospitalised, and these don’t include the occasions where I begged mental health facilities to hospitalise me. But the psychiatrist didn’t take any of this into account when he diagnosed me as having no mental illness, as he couldn’t understand that some people, for whatever reason, don’t receive the treatment they deserve.
This psychiatrist ignored the facts before him, refused to believe the story of my life and instead stigmatized both my mental health and homelessness. Fortunately, I had seen other psychiatrists in the past who were not as arrogant or quick to place so much emphasis on hospitalisation. The first such psychiatrist was in late 2007, and it was she who initially diagnosed me as bipolar. At the time I wasn’t linked to any mental health organisation and was seeing a psychiatrist privately as a result of the year that I’d had (breakdown, suicide attempts, emotional abuse, rape) and after several sessions with her she voiced her belief that I was bipolar type 1. After I was forced to return to the UK in early 2008, I began seeing a mental health service who referred me to a psychiatrist who was resident at Abergavenny Hospital. After seeing him as an out-patient, he too diagnosed me as suffering from bipolar type 1 and medicated me accordingly with mood-stabilisers and anti-depressants. In fact, since those initial consultations, I have seen many psychiatrists both in the UK and Australia and the only one to not diagnose bipolar was the ‘obsessed with my non-hospitalisation’ wanker in late-2011.
All in all, aside from that singular psychiatrist, I have always been happy with the way psychiatrists have treated me. They have all – especially the first two that I saw – treated me very well. They gave explanations for their reasoning and provided me with information about bipolar so that I could better understand what they believed was happening to me. In fact, the only thing that I wasn’t happy about how my diagnosis was handled, is to do with hospitalisation. I have long believed that had I been hospitalised I would be in a better position to cope with my illness(es) today. I also believe that had I been hospitalised I would currently be the recipient of better treatment, as the psychiatrist I last saw wouldn’t have so casually swept me and my problems aside.
But this is a minor quibble amidst my life. I can hardly complain about how my diagnosis was handled as I have read some true horror stories over the years about how people were treated during (and after) their diagnosis, and I am fortunate to not be the recipient of such treatment.
Today, I don’t believe hospitalisation would do anything for me. In fact, I genuinely believe it would make me worse. Courtesy of those initial psychiatrists I know what I’m fighting each day, courtesy of the internet I have a strong understanding of my illness, and – wankers aside – people generally accept my onset of bipolar and the illness in general without batting an eyelid.
All that I am, all that I ever was... 