What it's like to have bipolar, by people who have bipolar
It’s World Bipolar 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.
Around 1% of us will develop bipolar disorder, formerly known as manic depression.
People with bipolar experience both episodes of severe depression, and episodes of mania – overwhelming joy, excitement or happiness, huge energy, a reduced need for sleep, and reduced inhibitions.
The experience of bipolar is uniquely personal. No two people have exactly the same experience.
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.
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 away from home, 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 had met a superb psychiatrist via student health. Because in my extended Irish family there were a few people who were unusual, and at least two 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. By the time I felt properly back on an even keel seven years later I had accrued nearly £50,000 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 through volunteering.
My parents were unquestioningly supportive, financially, emotionally and practically. They resolved to push me through my degree at whatever cost. I am lucky they were able to.
I got involved in the student union movement and student mental health campaigning, which led me to my career. 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. But. I am recovered.
I’m constantly probing for where recovery ends and post mental illness starts. I am so aware of how a-typically bipolar I am and how lucky that makes me. Every time my heart swells with empathy for a fellow traveller in trouble, or dead to 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 40s 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 30s adds:
“The impact has been massive. It disrupted education, disadvantaged my career, and decimated my relationships.”
Hannah, a woman in her 30s describes the need for constant awareness of experience:
“I'm constantly aware of it. I am bipolar all of the time. Trying to stay well and steady takes a lot of effort.”
Cait, a mother in her 20s 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 and I 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.”
Blogger Tanya added:
“I feel that having Bipolar disorder has been both a curse and a blessing. The negatives focusing 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 not 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 20s…again though, there are a range of perspectives:
Brian talks of the possibility of recovery:
“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 who 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 to the theme park, those that will hop on rides with you and those that watch sensibly 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:
“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. 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.
“Depression can feel utterly shit and the worst thing in the world. But mania is the dangerous one.”
This can be a challenge when many believe mania to be exciting. I have even had people ask me how to get there.
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 revolves exclusively around manging 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 thing 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.”
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 did it carefully, over two years, with support, whilst learning other techniques.
“For 13 years, I took medication, but in the past six 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.”
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.
“I had seven years of psychoanalytic psychotherapy. I believed it not only saved my life, but helped me actually have a life.”
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.”
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 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,” says 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 seven hours sleep a day,” says 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!” says 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…”
- 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.
- Build a circle of support. Friends, family, professionals, community resources…all can help.
- 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.