Being Bipolar – Dis-Ordered systemic narrative and an opportunity to regain control.

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The National Disability Insurance Scheme in Australia and mental illness.

 

There really seems to be two trains of thought around medication and Bipolar Disorder. Those who think medication is a certainty, an absolute Medication is crucial for managing bipolar disorder”, “Bipolar disorder is probably the main psychiatric disorder where medication is absolutely essential. I’ve had people ask me if there’s any way to do this without medicine. [My answer is] absolutely not.” 1 and the anti-medication and anti-psychiatry movement (and the points in between where the two movements meld). Head along to any anti-medication page on the web and you will read plenty of points as to why they are opposed to medication, with little focus on how to achieve better outcomes on the whole. The anti-medication movement seems set against medical ‘tools’ (in this instance, medication) that can assist in managing fluctuations and outright swings in moods. I found a handful of useful sites that propose ways in which to manage Dis-Order without medication who also were reasonable enough to recommend the use of medication if required to stabilise.

 

The more medicalised and psychology and psychiatry based sites reveal the opposite. Some suggesting that the Dis-Order in Bipolar is unmanageable without medication (see above quotes). As with most topics the two opposing arguments seemed ‘preachy’ and self-righteous and for myself personally, both were as hard to stomach as the other.

 

Unlike many other illnesses, it appears that when it comes to mental health and mental illness everyone has an opinion. Unlike other illnesses there appears to be a perception that the general populous is somehow entitled to have a point-of-view about our lived experience. “You should be on medication”, “psychiatry is a money-making and corrupt industry and you should be off medication”, “have you tried just controlling your moods better?”

Jars

On occasions I purposefully choose not to disclose my lived experience for want of not changing the dynamics of the conversation at hand. I get to hear both the good and the archaic opinions and perceptions in relation to mental illness. Working in an executive role within the field of mental illness/health I get to hear it all and while I recognise there have been great improvements, we still have some way to go. I sat in a meeting recently with some case managers/workers who were discussing a change coming through Australia at the moment – the National Disability Insurance Scheme2 (NDIS). In a nutshell the NDIS has the power to mobilise and enable people (such as myself) who have a mental illness to make their own choices around the services they receive to assist manage their illness. It’s an interesting time as the power balance between services/carers shifts towards the service user themselves. The rolling out of the NDIS seems to have (at least in my experience) heightened the entitlement to ‘have an opinion’ of those of us with a lived experience.

 

The NDIS means that people with a lived experience who have previously been (with all due respect to carers) disempowered to make their own decisions around their care and now being encouraged (at least by the NDIS) to-do so. This is creating a remarkable amount of Dis-Order within the system and the way in which we (again) talk about those with a mental illness. Here we have people who have been ‘unable’ to make their own care decisions for 10, 20 and 30+ years, who under the NDIS are suddenly able to make choices to achieve the best possible outcome for their health. There are murmurs in the mental health sector that service users are ‘struggling’ to make these choices and are thereby missing out on services they are entitled to (services now only get paid when a service user selects them over another service provider, so you can see how this can seem problematic for the service providers, while being great for people with lived experience in the long run). What service providers are forgetting is that a Dis-Ordered system has been created around us, one which disengages us from autonomy and self-control, a system, which has historically silenced our care choices and made decisions for us and on our behalf. Especially for those with more severe and persistent mental health issues, the new liberating and enabling system under the NDIS is a new narrative for many – What? I get a choice in my health care? Yes we do.

 

The NDIS has bought about the polarising opinions of many, of carers, of guardians and of service providers. Again, like with the medication debate, those WITHOUT the lived experience are expressing their point-of-view, speaking on behalf of people with a mental illness, albeit guised as concern for the individual (concern which may be genuine to an extent) and cloaked in a thin veil of caring. I say this because I am privy to these conversations without people knowing of my experience of Bipolar and when I dig a little deeper under people’s concerns for ‘us’, it becomes apparent that there is apprehension about the shift of power from services and carers to the service user themselves. Undoubtedly if a carer or a service provider were to read this, I’m sure to have caused offence and to be criticised as not understand their actual intentions. Fine.

 

The NDIS brings about a remarkable change and with this there is a throw-back to mental illness being something to have an opinion about, rather than a health issue that is best managed by the person with a lived experience themselves (and supported when need be). One of the largest risks I see in relation to mental health and NDIS narrative at the moment is that while the NDIS rolls out and embeds, the voices of those without a lived experience of mental illness will cause such a din that people with mental illness will be hard to hear. Having said this, the core principles of the NDIS are genuine empowerment – the choice and control of our own health care will sit squarely with us. While the NDIS still has some bumps in the road to navigate, it’s potential is revolutionary and where we have been silenced in the past, once we regain our voice and confidence in decision making, the future is resoundingly ours to take.

 

  1. http://psychcentral.com/lib/10-small-steps-you-can-take-today-to-improve-bipolar-disorder/00016916
  2. NDIS http://www.ndis.gov.au/funnelback/search?query=mental%20illness

“Lord Of The Rings” Star Sean Astin Talks About Bipolar Disorder And Calls For Earlier Symptom Recognition

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“Lord Of The Rings” Star Sean Astin Talks About Bipolar Disorder And Calls For Earlier Symptom Recognition

freeplrarticlespot

Actor Sean Astin, best known for his role as Sam Gamgee in the Oscar-winning “Lord of the Rings” film trilogy, is willing to share his personal experience living with a family member diagnosed with bipolar disorder in order to help increase awareness of the symptoms associated with the condition.

Astin witnessed the condition’s trademark highs and lows throughout his childhood when his mother, actress Patty Duke, experienced symptoms of undiagnosed bipolar disorder for years before receiving an accurate diagnosis and effective treatment. Duke’s delayed diagnosis is not uncommon and mirrors the results of a new survey of more than 500 people with bipolar disorder, which shows an average delay of 13 years between symptom onset and diagnosis.

The survey, which was conducted online by Harris Interactive and sponsored by AstraZeneca, included 500 persons medically diagnosed with bipolar disorder.

Lord-Of-The-Rings-Star-Sean-Astin-Talks-About-Bipolar-Disorder-And-Calls-For-Earlier-Symptom-Recognition

“Though my mom was the one who struggled with the symptoms, the…

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Bipolar Disorder and the highly sensitive person

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Bipolar Disorder and the highly sensitive person

Bipolar Disorder and the highly sensitive person (lived experience and those that care for us) – the lived experience perspective.

According to J. Raymond DePaulo Jr., M.D. caring for someone with Bipolar Disorder is akin to caring for someone with severe and terminal cancer. There are no other illnesses that compare to the continued effort and exhaustion experienced by carers of people with a lived experience of Bipolar Disorder (BD).

The manic depressive episode experienced by people with BD and those that care for them can (believe it or not) enhance family communication and ‘tightness’. It all comes back to how the sufferer and the carer manage. A person with a lived experience of BD can in actual fact enhance your life. Our perspective and our insight can enrich the daily grind. When managed well, a person with BD can change the way you see things. Thinking outside the square and the necessary need to develop insight and awareness can actually benefit those around the person with the BD lived experience. It’s how we survive. Often seen as ‘highly sensitive people’, intuitive and responsive, it is true that we can live our life in a state of high alert (elation), with intermittent periods of downtime (depression).

Expressing our lived experience to those either “around us” or those who care for us can be a difficult experience. To be able to demonstrate that our experience is an illness and not a weakness, can be the most difficult thing of all. Our sensitivity or acute awareness may manifest as a panicked episode or a heightened sense of our environment, resulting in an inability to manage information which for other people, may be easily processed (think trauma, animal cruelty and exposure to disturbing communication/s). For myself personally, I have had a number of events occur in my life where I am extremely sensitive to ‘energy’ around me. (Bare with me, this is left of centre…of course). I once was driving with my son into the valley where I live. It was late at night and I had a ‘sense’ that there was a meteorite about to strike the earth. My son was asleep as I began to panic. Then from his hazy slumber he said the word “meteorite”. It was enough to stop me in my tracks. I had to call my husband for him to come and collect us. Within my heightened state of awareness, I had an overwhelming sense of harm to people on earth. I think it was early 2013, maybe February? That night a meteorite struck the earth injuring over a thousand people in Russia. How do I know? Every time I get this type of sense, my husband watches the media for reports that what I felt to confirm whether my senses were valid. More often that not, it is. We use this as a tool to manage my wellness, since too many ‘misses’ means I may be heading into dangerous territory (psychosis, paranoia et al).

This is what makes my husband my greatest carer. He doesn’t disregard my experience. While I recognise that this is not what it is like for all people with BD, I have come across too many other ‘sufferers’ that have had similar experiences to disregard my own as coincidence. Fortunately my husband doesn’t look for coincidences either, he looks for the ways in which my senses align themselves with reality.

I can imagine (if I were a carer) that it would be much easier to look for more plausible explanations, or to disregard and not pay much attention. I truly see that this would be a reasonable response…after all we are “insane”.

The highly sensitive person (HSP) has been well documented. The person as highly sensitive and with BD is yet to be fully explored, although there are plenty of lived experience blogs which address this, yet for many the correlation can be disregarded. Part of the HSP/BD complex is that, where in Western culture success is measured by how busy you are, how much you earn and how well liked you are, all of which can be triggering for a person with lived experience. Unless I’m in a state of mild to moderate the mania, I’ll be frank, you would probably find me bothersome and with a history of holding down a job for no more than 2 years (mostly due to boredom and sometimes paranoia) it is difficult to achieve the stability required to be considered a success. In fact, what many people without BD seek to achieve in life, I find a stressor, triggering episodes of either depression or mania.

The experience of being a person with a lived experience of BD and thus a HSP means that during times of mild to moderate mania, I can be flooded with inspiration, creativity and a wealth of ingenious ideas. Now of course not all of these ideas can be harnessed, yet those that can may lead to the start of something great. For myself, these ideas often stop in their tracks due to the pattern of my experience. Mania; influx of ideas, the sense that things move too slowly and then the abandonment of the ideas due to restlessness, irritability and agitation, often resulting in a depressive episode.

I envy the HSP who tends not to fluctuate between mania and depression, since my fluctuations can indeed be life threatening, this is (to me) what distinguishes the HSP from the HSP/BD person. It’s not so much my down turn into depression that is the most risky moment for me, it is the stability that follows, the not knowing when the next up and down will be that really has me come undone. It is the thought of the depression that fills me with fear, not the actual depression itself (as strange as that may sound).

I have openly described myself as a HSP, well before I was ready to disclose my lived experience of bipolar. It seemed (and still does) that it is much more acceptable to be a sensitive type than to be a mood disoriented/fluxing person. After all, we all feel sensitive at some point, yet not all sensitive people loose their sense of self in the ride between the two opposing points; mania and depression. The highly sensitive facet of my illness is (to me) a gift, the rest (the disassociate highs and the unbearable lows) is a burden I feel I must bare, a circumstance of the sensitive self.

My husband has reflected to me that I appear to have a great capacity for empathy, for spirituality and a thirst to seek greater meaning in life. He and I also recognise that this quest for meaning can be interrupted by my illness, I take two steps forward into awareness and one-step back…this is guaranteed.

At one stage I could barely put one foot forward, so the effort of taking two steps resulting in one, is a good outcome all things considered. Through my BD lived experience I have come to recognise the value of meditation, of following a spiritual path, of getting out in nature and I am learning to master the art of distraction. Through distracting myself from my sensitive thought patterns (fear, gloom, paranoia, elation) I am able to begin to break the BP cycle. It isn’t perfect, but it is an improvement.

Bipolar disorder is not a character flaw: Finally! (A psychiatrist speaks out)

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So today marks World Bipolar Day and generally speaking, people with Bipolar Disorder continue to experience stigma, discrimination and misunderstanding. Today Professor Phil Mitchell, Head of Psychiatry at the University of New South Wales, spoke in defence of sufferers such as myself, noting that Bipolar should be treated no differently than other illnesses such as diabetes or cancer.  He goes on to note that people with lived experience of Bipolar don’t intend to make life difficult for either themselves or others and that as a mood disorder much of the associated symptoms are like other diseases.

I feel that this article is well timed and for a change, I feel as though I have a psychiatrist batting in my corner, it hasn’t always been like that. When I first visited a psychiatrist (at the recommendation of my psychologist), I was as yet undiagnosed and obviously un-medicated. I spoke to this psychiatrist the same way in which I spoke to most people, you see at the time I identified as a medium and psychic. As we sat down I spoke to him of his dead Aunt, who I believed was standing next to him and giving me messages to relay. Needless to say by the time our session was complete I had a script for anti-psychotics and mood stabilisers. I went back to my psychologist and he recommended I seek another opinion, just to be sure.

I sought out another psychiatrist, this time a female and from a different cultural background. This was important to me, since I felt perhaps her diverse cultural experience may impact on the outcome of my diagnosis, or at least on the medication regime prescribed. I wasn’t disappointed. I still came out with a diagnosis of Bipolar Disorder, although this time it was Type II, not Type I. She also felt we should begin with mood stabilisers only. Her words had a huge impact on me, since both in and out of hospital, my experience with Psychiatrists left a lot to be desired. She mentioned that I was reporting spiritual phenomena and that (in her opinion) there were things that psychiatry couldn’t explain. She challenged the status quo by asking who she was to contest my perceptions that I was indeed a physic and a medium. She shared with me some of the cultural singularities that still takes place in her home country, all of which involved shamanic practices and fortune telling. That was a number of years ago and I have remained relatively well on the mood stabilisers and have had no need for anti-psychotics (although I still hear voices and see things that may not be there).

I manage to raise my children well, hold down a part time job and continue studying at university. I recognise that people see me as eccentric or some such thing and I have had it reported to me that I’m (apparently) quite unusual in my approach to life and to my role as a manager.

The article goes on to talk about the way in which people with Bipolar Disorder need support around them, similar to the other illnesses mentioned, helpful partners, doctors and friends/colleagues all go to make our journey more bearable. This takes me to a time when I was supporting my mother through cancer. She had days where she was so unwell (physically and mentally), so exhausted and so run-down that she couldn’t get out of bed, while other days she was able to go about functioning relatively normally. I resigned from a job to take care of her almost full-time. I would take her to appointments, make her meals, sit with her and keep her company. She came through in the end and is in full remission.

When I ‘came out’ to my parents about my diagnosis of Bipolar the look of horror and confusion said it all. My father explicitly asked whether I was like ‘them’ (meaning the service users I had worked with in my mental health role). Although I left literature around for my parents, my illness remains a taboo topic and one, which they avoid at all costs. I could take up the baton and really ‘get to the bottom of it’ with them, although I feel this is more effort than it is worth. I have enough friends and supports around me to not need to go into battle with them in relation to their own stigma. This is how I feel about my illness, battling ignorance, misinformation and stigma are constants in my life and in order to not become completely worn down, I need to choose my battles carefully.

Currently I work proudly with a mental health organisation that educates the police/services, community, schools and clinicians to raise awareness and reduce stigma around mental illness. I’ve had a great number of conversations with federal and state police and mental health clinicians who are engaged and enthused to address the matter of mental health stigma. Coming across this article today was a reminder that not all are against ‘us’ and that reducing stigma by people both with and without lived experience is the best way to go. When a Psychiatrist can speak so boldly about such matters, I know that, while we have some way to go, things are changing for the better.

http://www.sbs.com.au/news/article/2014/03/30/bipolar-disorder-not-character-flaw-psychiatrist

Australian Services

Lifeline
For all ages
24hr helpline: 13 11 14
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Suicide Call Back Service
For all ages
24hr helpline: 1300 659 467
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Beyond Blue
Ph: 1300 22 4636

Sane Australia
Ph: 1800 18 SANE (7263)

Black Dog Institute
Clinics: (02) 9382 2991

 

Bipolar Disorder & Unemployment

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In relation to my lived experience of Bipolar Disorder, there have been some highlights of my career and some areas that I work to improve and I have come to recognise that both are interchangeable. A recognised trait of my workplace practice is that of ‘innovation’. I’ve worked managing programs for more than a decade, in fact it has almost been two-decades if I were to be honest. I bring to program management…

…and development an ‘outside of the square’ approach to development of content and the implementation of mentioned programs.

In this respect, I have found myself in circumstances whereby I rapidly progress through an organisation, since employers often see my innovation and creative approach to management as an enduring trait or feature, when in reality, I have come to see that it is one of many facets of my illness, bipolar disorder.

It isn’t unusual to read about the linkages between bipolar and ‘creativity’ (how ever this may manifest). For someone such as myself, this can work as an advantage, since it can set me apart from colleagues who have an alternative method of cognition. While I recognise that my illness is relatively well contained, (I can hold a job, even if temporarily and I have studied at post-graduate level, even if my study is punctuated with hospitalisation), and that others have difficulty managing day-to-day living, it all becomes relative and in my case what initially arises as an organisational benefit can (as does) become a liability given time.

I have come to reflect that there are particular symptoms associated with bipolar disorder which affect me in the workplace and not in my private sphere. Where as a private citizen I can ride the peaks of my euphoria through art, music and writing, this must be done within my own time and according to my own agenda. The organisational context simply doesn’t permit this. By this I mean that (even on medication) my euphoric states can see me create well into the night, with the obvious repercussion of exhaustion the day following and the day after that. This simply doesn’t work in an organisational context, where the hours I work are dictated by powers (and logic) beyond me.

As do many with bipolar disorder, I have bursts of engagement and clarity with the pay-off of down periods and depression (usually as a recuperative measure which is out of my control). This moments of elation see me producing some of my greatest works. When these episodes of mania go unaddressed or begin to spiral out of control, I lose the creativity, the insight and direction that I so desire.

Up until my latest role, I have never identified as having a lived experience if bipolar disorder, and so from the surface (resume in hand) I appear highly functional and able to ‘cope’ in the world created around me. Hiding in the closet tends towards me gradually becoming undone. I can tend towards spiralling into paranoia, and when very stressed, I head back towards my delusions and hallucinations. Looking at my current role, I can see the benefit of coming out of the closet, both for myself and the organisation. You see, my current role is an identified position. The organisation actually encouraged people with ‘lived experience’ to apply. This is most unusual, considering it is a senior role. In my new position I can head into work and disclose that “I didn’t sleep well last night, and I’m feeling quite elated”, “I’m feeling exceptionally sad/down and I have no understanding of why”…these statements and the ability to express them, see my team gather around me (or give me space depending on what I need) and my manager allocate work that suits my current state of mind. This is hugely effective and I know I am fortunate to have such a position in such a supportive organisation.

This approach to enabling people to identify as having a lived experience acts to benefit the individual, the team and the organisation, since as we know, there are plenty of people in the workplace who are unable to disclose their mental illness, which undoubtedly (and through experience) only furthers the symptoms and effects of the mental illness itself.

Why can’t we have identified roles in organisations, such as we do for particular culturally diverse people and gender specific roles. Identified roles act to support the individual and to build work-place and personal esteem. It enables an organisation to experience first-hand the value of employing someone with a mental illness and to harness the unique capabilities a person with lived experience can provide. I don’t mean to romanticise mental illness by any means, since the employment of myself comes with some organisational cost…winter is a season when I require extra down time, while spring is a time to embrace my zest for life. I don’t ask for special concession in my identified role, simply because I don’t need to. Concession isn’t given, understanding and empathy are and in-turn I infuse my creative nature into my role and the programs I manage.

While in the closet I managed to have some great success in putting programs on the map. Taking local programs and receiving national recognition. While this was hugely advantageous to the organisation, this practice was not sustainable, since as a person with bipolar disorder, once I hit the mark I am looking for the next adventure, the next program to establish…I simply don’t do repetition well. I have found now, an organisation that actively moves staff between roles and programs in order to keep those who need regular (in my case 2-yearly) stimulation. It works well and it works to everyone’s advantage.

For people such as myself, those able to work while managing mental illness, I would call for more identified roles, which act to provide equity to those with lived experience while also harnessing all that such a diverse population has to offer. The identified role I currently have is not the norm. I wish it were. It is only a matter of time before my next creative influx that I begin to have a closer look at ‘identified roles’ – high level roles which harness intelligence and support all involved, all while offering an educational experience to the broader community. Here’s to the next 2 years.

I don’t see myself in there at all – Media and mental illness

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My husband sat me down to watch a movie about a guy with bipolar disorder, something about a silver-lining. Yeah, I know it was a big movie and the time and someone won something for it somewhere. Still, I realised my husband knew little about the distinction between bipolar II and bipolar I. Essentially, I don’t walk around in garbage bags and I don’t live with my parents.

I have Bipolar Disorder II (BPD II). So what does that mean exactly? Well, I’m not entirely sure. Having said that, I know that I can ‘come across as a little left of centre‘ and I know that I have moments of deluded grandiose and times when I wish I wouldn’t wake up…and everything in between.

Firstly the grandiose can on occasions result in the most peculiar behaviour, not of the garbage bag wearing variety, more of the kind where I believe I can do anything and that I must be a genius of some sort, since everything I think at the time is utterly astounding (at least I think so) and demonstrates an incredibly high intellect. Fortunately my friends are beyond being fooled and they know that when I begin to ramble on about a hydrogen collider and such, it usually means I’m on the way to becoming unwell…again. I am actually relatively bright, and there is a time, just before I become really unwell when my science background and training does appear to kick in and I sound very bright and actually make a lot of sense.

During these times (which I will call the lead up to mania) I actually feel like I am the person I am supposed to be in the world. There are very few other times where I feel so ‘at home’. This lead up to mania is the time that I miss most now that I am medicated.

Anyway, while in Silver Linings I did see some of myself, that person didn’t have to work (I do or I don’t eat), they lived at home with their parents (I’m too busy being a parent) and, well, to be honest, I didn’t watch the rest…but perhaps I should.