Archive | March, 2016

Bipolar Awareness Day

30 Mar

It’s bipolar awareness day. It’s always one awareness day or another in mental health, and that can help, because talking about mental health can increase awareness, and hearing directly from people with lived experience is the best way to beat stigma.

Everybody has mental health and we all experience distress. Around 1% of us will develop bipolar disorder. Bipolar disorder used to be called manic depression. People with bipolar experience both episodes of severe depression, and episodes of mania. Mania is the exact opposite of depression.

In a depressive episode a person may feel overwhelming sadness, slow thoughts and actions, low energy, tiredness, feelings of shame or guilt and thoughts of suicide. During mania a person may feel overwhelming joy, excitement or happiness, have huge energy, a reduced need for sleep, and reduced inhibitions. These reduced inhibitions can lead to risky behaviours, uncontrolled spending, substance misuse and damaged relationships. In both states, a person with bipolar may experience psychosis. In depression this may involve feelings of guilt, paranoia, or a belief that they are evil, contaminated or invisible. In mania psychosis often involves a person having exaggerated belief in their abilities for instance believing that they have super powers, or that they are a figure from history or religion. It is also possible to experience mixed episodes, where for instance the energy and pace of mania can be combine with the guilt and anxiety of depression leading to intolerable levels of agitation or fear.

The experience of bipolar is uniquely personal. No two people have exactly the same experience. Some people have a lot of depression and few manic episodes. Some people have one episode of mania and never see one again. Some people cycle between episodes rapidly, some slowly between extremes. Psychiatry has described several subtypes of bipolar. Bipolar Type I is characterised by episodes that meet the criteria for both severe depression and mania. This is where psychosis at either mood extreme is most often seen. In Bipolar Type II a person experiences episodes of severe depression, accompanied by manic episodes that don’t become psychotic but stay at a reduced peak called hypomania. Cyclothymia is similar to bipolar disorder, where moods vary between moderate depression and moderate hypomania.

Bipolar disorder is thought to have a genetic component, as it often runs in families. That said, it isn’t a simple genetic condition, in that a large number of genes and other factors appear to be involved. Like most mental health problems, the environment in which you live and the experiences you have also shape your likelihood of developing the condition and the impact it has on you. Rates of employment in people with bipolar disorder are much higher than with schizophrenia for example, often because people have periods where symptoms are more manageable, or are absent, and because treatment can be very effective.

Even so, people with bipolar disorder are still subject to profound health inequalities and parallel conditions such as heart disease and diabetes, and may die as much as 21 years earlier than the general population, even when suicide as a cause of death is excluded. It can take up to 12 years to get an accurate diagnosis of bipolar disorder, which is a huge delay when treatment can be so effective.

The mainstay of treatment for bipolar disorder is medication and close monitoring. Mood stabilising drugs like lithium, carbamazepine, olanzapine or valproate can be taken long-term at a maintenance dose. Anti-depressant drugs or sedatives can be added to address manic or depressive episodes. All medications have side effects, many of which can be severe and themselves require treatment. Increasingly the role of self-management, peer-support and recovery movement is being recognised as key to living with what is for many a lifelong condition.

Bipolar disorder has been associated with genius and with creativity. It is certainly true that a number of contemporary high achievers and creatives have spoken of their experiences, and throughout history it is possible to recognise bipolar type traits in the artistic, political and academic spheres. But what is it actually like?

I was diagnosed with bipolar in my late teens, in my first year at university. The diagnosis (and not I hasten to add the symptoms) have shaped my adult identity and experiences. This week I have been collecting answers to four simple questions from a range of people who have bipolar, to demonstrate the range of experiences out there, and some of the things that help.

The first question I asked was ‘what impact has bipolar had on your life?’

For me this is important because my experience is very unusual. I took antidepressants in my last year of school, which when I arrived at University and took the control of living at home away helped to induce hypomania.

I was already aware of my mood swings, and studying biomedical sciences. I went to the doctor and said I thought I had bipolar, and he agreed. I met a superb psychiatrist via student health services, which were on campus and part of the university. Because in my extended family there were at least two people with probable bipolar a working diagnosis was quick.

My school and university experiences were coloured by mood swings. I cycled rapidly between deep depression and hypomania. I ate too much and drank too much in part because of the medication and in part because of anxiety and became very obese. I had some embarrassing moments of drunkenness, self-harm, obnoxiousness and accruing of debt. I repeated a year of study, which turned into a year of intense involvement in the student union movement and student mental health campaigning, which led me to my career.

By the time I felt properly back on an even keel seven year later I had accrued nearly £50k of unsecured debt, which it’s taken a decade to pay back. So I don’t have a house, or a postgraduate degree which I’d have liked and which would help now. But. I had my life. I avoided hospital, thanks to my psychiatrist, brilliant GP, online peer support and carefully nurtured insight. And because I found a sense of purpose, self-esteem and a job through volunteering.

My parents were unquestioningly supportive, financially, emotionally and practically. They even donated blood for a research study. They resolved to push me through my degree at whatever cost. I am lucky they were able to. I know just how lucky now, given what I know now about inequality, mental health and what happens when you don’t have support.

Bipolar shaped me. But never broke me. Nowadays all I have left is a ghost of an identity formed in a diagnosis. Sometimes my self-stigma or real stigma inhibits my career. Sometimes casual disclosure leads to awkwardness. When I run into people who knew me then it can be tricky.

But. I am recovered. Nevertheless  I’m constantly probing for where recovery ends and post mental illness starts. I am so aware of how atypically bipolar I am and how lucky that makes me. Every time my heart swells with empathy for a fellow traveller in trouble, or dead too young, I thank my stars. And commit to continuing the work I do.

Other people I spoke to had a range of views. Bipolar can be cruel, as Brian, a man in his forties describes:

“My first major episode had a big impact in my life, I lost my job, my marriage broke down, I struggled with relationships and lost any sense of who I was. At times suicide seemed the only real option. Fortunately, recovery and relearning about myself has brought its rewards and I have a good life today.”

Joan, a mother in her thirties adds:

“The impact has been massive. It disrupted education, disadvantaged my career, and decimated my relationships.”

Hannah, a woman in her thirties describes the need for constant awareness of experience:

“I’m constantly aware of it. I am bipolar all of the time. As someone who rapid cycles there’s a constant watch on mood, symptoms, strategies and warning signs. Trying to stay well and steady takes a lot of effort.”

Cait, a mother in her twenties talks about the ongoing impact of experience that started at a young age:

“It’s shaped my life because I became unwell in my teens, which resulted in me dropping out of school.  Becoming unwell at such a critical period in my life shaped my self-image, too- some of my behaviour was perceived as being very bizarre and as an adult, I do struggle with social anxiety. Episodes can be pretty destructive, and it means I find it very difficult to take anything for granted- no matter how well my life is going, I know I can get ill and it can be wiped out, as it has been many times before.  I put off having children for a long time because I was frightened of getting ill. 

The positive aspects are that when I started blogging about it, I tapped into an entire network of people who had felt the same, who were living with all, and it gave me hope. And there are feelings- just residual ones, but I feel them years later- of the invincibility and joy in some manic episodes, of standing on a hill in the sun and feeling alive, and I can still summon that feeling when I need to.”

Blogger Tanya added:

“I feel that having Bipolar disorder has been both a curse and a blessing. The negatives focussing on some of the more harmful actions I have taken as a result of the disorder, such as falling in to self-medicating habits which lead to addiction. Bipolar has provided some heavy limitations, such as having time off work and needing rest when episodes come along unpredicted, and not being able to look after my young daughter when it is in full swing. However, in a good light it has also separated my true friends and family from the false ones who did not care for me in the first place. I am very lucky to have a close circle now, each person I know truly value me, and see the real person that I am through the disorder.”

Blogger Anna said:

“I’ve had numerous admissions to hospital and crisis houses, taken overdoses, cut myself, and put myself in very dangerous situations when manic. All of those things have been awful, but they don’t even begin to compare to how soul-destroying it has been to have the life I once believed was a given taken by bipolar. As a teenager, I was a high achiever. I was destined for academic and occupational success, but I haven’t been able to work since I was 18 and I had to drop out of university because I was too unwell. Being unable to have that life has forced me to find other ways to feel productive, valuable, and successful. I volunteer, study part time with the Open University (I will finally get my degree next year. I started university in 2009!), and earn a small income from blogging.”

 

What have you learned as a result of your experiences?

Living with bipolar, often for years, teaches you a lot. About yourself, about mental health services, about medication…and sadly often about stigma, shame, and discrimination. I’d say for me it was a key driver for learning about me…but also a red herring as I feel I vested too much of my own identity in clinging to the life-raft of the diagnosis as an explanation of my life in my early twenties…again though, there are a range of perspectives:

Brian talks of the possibility of recovery – living a good life whether or not you have symptoms-

“Despite what others may tell you, or what you might believe, recovery is possible. I never thought I could be a worthwhile human being and have something meaningful to offer. That’s just illness speak and the effects of learned stigma. It doesn’t need to be that way.”

Anna points to learning about what is important in life:

“I have learnt that I am more resilient than I could have ever imagined. I have discovered that there is more to life than getting a degree or a good job. I have learnt that I have amazing friends. They have never stopped believing in me, even when I couldn’t believe in myself.”

Hannah draws on a theme park analogy to talk about assembling your team of helpers:

“I feel like I’m riding a constant rollercoaster of moods. There are people who are too scared to come in theme park, those that will hop on ride with you and those that watch sensibly watch in awe and sickness from a distance minding your bags. All of those people have a valid and useful part to play in your life.”

This is a point echoed by Cait:

“Having support around you is important, because left on my own I would have been in a much worse situation. I have learnt how important it is to reach out to others when I am unwell, even when I don’t feel like being around others. I make sure at least someone close to me in my life knows when I am feeling unstable, whether that be a family or a doctor. Going through episodes alone has had some disastrous consequences in the past.”

Hannah points to long experience of episodes to reflect that mania is the most dangerous state for her. This can be a challenge when many believe mania to be exciting. I have even had people ask me how to get there:

“Depression can feel utterly shit and the worse in the world. But mania is the dangerous one.”

Several people reflect on the need to make peace with actions taken whilst unwell:

“Getting a diagnosis was a relief in that sense, because it helped me to articulate to people close to me what was happening, and they could help me and understand some of my odder behaviour when I wasn’t well.  That there is very little that is irretrievable, even though it doesn’t feel that way at the time. I also believe there is great value in forgiving myself for actions that may have taken during my highs or lows, it helps me to move on to stability much quicker than dwelling on it.” (Cait)

Joan was right to the point:

“Faith, hope and love, the greatest of these being love

 

What do you do to keep well?

Keeping well when you have bipolar is an interesting concept. For some it revives exclusively around managing moods. For others it means fitting life around moods. For me, and others like me who are deep into a recovery that seems to be holding, it’s about keeping an eye, and investing in the things that help us all boost our mental health.

For many, if not most people with bipolar, life and keeping well includes taking medication.

Blogger Tanya said:

“The think I most prioritise with keeping myself well is to be strict in taking my medication. Missing doses or tweaking them without professional help can be devastating, even if you feel like you can handle it at that point in time.”

Again, I’m going to buck the trend and say I don’t take medication routinely. I took lithium for a decade, and then wanted, once I knew myself and had done my research, to try tapering off. That was eight years ago, and I’ve managed it. I didn’t it carefully, over two years, with support, whilst learning other techniques. I’d take mood stabilisers again if I needed them, but I don’t.

Cait agrees:

“For thirteen years, I took medication, but in the past 6 months, I’ve been trying to cope without it. So I have to be super careful, and alas, super boring. I don’t drink a lot, I have relatively early nights when I can. I try to reduce stress, which is tricky with a baby and a full time job, and I try to be honest about how I’m feeling so that I can get support when I need it. I keep quite a close and open relationship with my GP and psychiatrist, and I have a, ” advance directive” that details what I want if I become unwell.

Bipolar can also be triggered by trauma, or other life events and sometimes part of therapy is addressing underlying concerns to get someone to a point where they can start to see a life worth living.

Anna said:

“I had seven years of psychoanalytic psychotherapy (one of the few lucky ones who get this on the NHS). I believed it not only saved my life, but helped me actually have a life. Medication was an important stepping stone to get well, but I don’t think it is the only way to manage bipolar. I chose to be un-medicated for 18 months and did very well but, after a recent severe episode, I have decided to go back on medication, at least for a while”.

Self-Management, either formally in course MHF or Bipolar UK run, or less formally can be key.

Hannah has a rigid menu:

“Monitoring. Mood diaries. Medication. Management plans. Making and keeping a routine. Being me.Doing one thing that is the same every day. Doing one thing that pushes me out of my comfort zone every day. Seeing a particular friend every Wednesday for lunch. No matter what happens or how I feel that lunch commitment is there. And there’s someone who can objectively see my mood shifts over time which is a valuable insight and I have a marker to see it too. We have a natter but whatever we are going through, my bipolar woes, or her job hunting, house move or wedding planning. We know that we have that guaranteed time and space for each other.

You can monitor mood via downloadable or printed mood diary charts, or through several apps and web resources. Personally, I monitor my moods consciously if I am worried, unconsciously otherwise, and I take have taken antidepressants for a year or so at a time when I feel I’ve needed extra help. I try and practice mindfulness daily, and remain wedded to my work and its importance to my identity.

Besides this, people say, unsurprisingly that they keep well by doing things that help everybody keep resilient and mentally healthy:

“Routine is also important in bipolar disorder; I try and find the right balance with sleep, work and my social life. I can track the majority of my relapses down to a shift in routine or a major life change.” (Tanya)

Balance is important. I make time for family and friends, time for me to relax and have fun, and I aim for at least 7 hours sleep a day.” (Brian)

“The single most important thing I do to keep well is manage my sleep. I was diagnosed at 17 and spent my early twenties doing everything a person with bipolar shouldn’t (staying up late, drinking too much, taking drugs, taking on too many responsibilities or projects etc). I learnt what to do to keep well by doing everything wrong! Other things that help include talking to friends, and doing things that increase my self-esteem and help me keep a routine (such as studying and volunteering). “ (Anna)

 

What single piece of advice would you give a person just diagnosed?

Based on all the insights shared we’ve come up with the following list…but it’s not exhaustive. Speaking personally, I’d say “Hold on. It gets better. Different. But better…”

The combined tips list includes:

  • Find out about bipolar. Use trusted web resources or library books. Learn about treatments. Research medications. Know your options. Talk to people.
  • I know it’s tempting to hinge every experience and feeling you’ve ever had on the diagnosis, and to an extent, it’s a very natural thing to do, but you’re still you, you still have your own feelings and thoughts, and your own language and perception of your own life. Try not to adopt an illness identity. You are you. Not bipolar. Get to know yourself.
  • Throw yourself into treatment and get well…learn some good strategies for taking care of yourself, but remember there’s a person under the diagnosis- there was before you were diagnosed, and there will be after. Bipolar might change you, and that’s OK. Recovery doesn’t mean cure, but it can mean lots of new opportunities.
  • You and your doctor are equals your care. In the consultation room you bring the real life experience, your own personal circumstance (family, work, interests) and knowing what works for you. Your doctor brings years of valuable knowledge, study and experience of treating others. Work together. Respect each other. Ask tough questions and expect tough questions.
  • Reach out to other people with the diagnosis, whether that be through a community support group or via social media. It’s easy to feel the shock of isolation when you are first diagnosed. I believe that hearing other people’s experiences and connecting to those who are in the same boat can not only help with accepting the illness, but with also providing sense of ‘normality’ within the community.
  • Find out about bipolar, join a support group and learn from peers how to live well. You need to work out what works for you. Learning about this and exploring what helps you ideally with people on a similar path can be very empowering.
  • Work with bipolar rather than against it. Pretending it doesn’t exist won’t make it go away. In fact, it will make it so much more difficult to control.
  • Try to learn from everything, good and bad. Every experience will teach you something. Prepare an advanced directive/advanced statement that can serve your interests when you aren’t able. If you are in Scotland, make sure you have a Named Person you trust in case you are detained.
  • Build a circle of support. Friends, family, professionals, community resources…all can help. If you can build a wide circle of support you won’t feel like you are laying too much on any individual. Well you might. But you won’t be.
  • Put safeguards around managing your money when well to protect yourself when too low to motivate and organise yourself or too high to care. I’ve always found banks and creditors very helpful when I tell them that I have bipolar.

 

With grateful thanks to all who contributed to this piece…your names have been changed to preserve your identity.

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