bipolar & recovery
“Serious illness involves a major adjustment. A watershed has been crossed, and life will never return to what it was before…We need to reassess what matters, adjust our priorities and go forward in a different way.”
(From: The Well Gardened Mind. Rediscovering Nature in the Modern World by Sue Stuart-Smith)
Bipolar is a lifelong commitment. It doesn’t have a cure. You learn to live with it and manage it. Sometimes you rail against it – screaming and crying and throwing all your hurt towards the condition that causes you to behave in ways you deeply regret, hurt people you love, spend all your money and take ages to pay back your debt, drive at 140km an hour down the middle of the road at 2am in the morning – and other inventive ways to put your life, health and reputation on the line.
It takes time and courage to come back from a bipolar episode. You almost have to rebuild yourself from the ground up. After a high, there almost always comes a chasm of a low. Sometimes you’ve got to apologise to others. Often, you need to be on the receiving end of your apologies and forgiveness.
You didn’t do any of this on purpose. You don’t need to feel guilty. But you do.
Self-stigma is real. But when I feel weak and my bipolar is telling me I’m a coward, I’m not enough, I can’t do anything, I’m going to refer to the following quote from Carrie Fisher who was diagnosed with bipolar aged 24:
“One of the things that baffles me (and there are quite a few) is how there can be so much lingering stigma with regards to mental illness, specifically bipolar disorder. In my opinion, living with manic depression takes a tremendous amount of balls.”
(From: Bipolar Disorder: The Ultimate Guide by Sarah Owen, Amanda Saunders)
Often, I want to go back to the Katie I was before the diagnosis. I’ve got this nagging idea that I was more productive, more sociable, more popular. I also wasn’t a mum, a small business owner or a wife, but somehow my brain conveniently forgets that.
After I was diagnosed with bipolar, for a while I completely identified with the label. There was no distinction. Bipolar is Katie. Katie is bipolar. My calendar was built around events like tests – a brain scan, countless doctor visits for prescriptions, psych appointments, maternal mental health coffee afternoons, staying in respite care, and even time in hospital when I was sectioned. Bipolar became so ingrained in what I did and who I was, I began to believe this was it. Bipolar was the beginning, the middle and the end.
I still think about bipolar. I still have days where I identify with it. But I try and hold it more lightly. Talk to it. How can I manage you? What do you need? Will taking this opportunity be good or will it trigger you? It’s not that cliché of my inner child, but in a way it is. I do my best to be soft with it. Tender, even.
Recovery is not linear. It’s a jagged little pill. I’m always going to have setbacks. I don’t know if another major episode is inevitable but it’s always in the back of my mind.
Like anything in life, recovery requires a village. It’s impossible to go it alone. Recovery is a collective slog. I let my husband in on how I’m feeling rather than trying to carry on and hold it in. Bit by bit, month by month, podcast by podcast, social media post by social media post, neighbour talk and new friend talk, I’ve told more people about my diagnosis. My village grows.
Talking about bipolar has been a turning point for my recovery.
I’m going to quote the same book again because it’s so relatable:
“Saying, ‘I have bipolar’ is enough… Every time those words are spoken it’s a nail in the coffin for ignorance, shame, prejudice and stigma.” For me, I’ve wanted to share more of the intimate details to get to know myself and what bipolar means to me and to raise awareness. But everyone is different, and we don’t all have to go personal and deep in the fight against stigma.”
(From: Bipolar Disorder: The Ultimate Guide by Sarah Owen, Amanda Saunders)
Every time I mention that I live with bipolar, it loosens its hold on me. The knot is there, but it’s not a muzzle anymore.
And nearly every time I share it, whether face-to-face or online, in front of a group, or one-on-one somebody says, I know someone with bipolar. Or, I have bipolar, too.
It’s not as common as depression, but it’s not rare either. In a room of 100, around five people will have bipolar. (Unless you’re at a service user conference and that number is much higher – my pill pals!) I find that reassuring but I also want to put my arms around those other four people and say are you doing, ok? Is your bipolar manageable? Have you got the right support?
Once I realised the power of sharing my experience – both in the way I view myself and raising awareness, I became obsessed with it. It gives me a lot of meaning and passion to know that being open with my struggles could help someone else. If I’m in a doctor’s appointment and there’s a student there, I’m always happy to share my story with them. I want to educate people on my experience because it might help them respond with greater understanding to their next bipolar patient.
I only use the word patient as shorthand – I know it can be deeply problematic in terms of power struggle. You may choose to use the word consumer, survivor or bipolar warrior. Whatever fits.
Everyone’s recovery trajectory is different, and it depends on so many factors – medication, support, stigma, socioeconomic status, sexuality, living situation, relationship status, religion, concomitant illnesses. The intersectional list goes on.
It’s only five years later that I’ve come to grips with my privilege. I’m lucky that when I was in hospital, I had a home to be discharged to and loving, respectful shoulders to cry on.
I’m lucky that I have a church and family and friends who were willing to wrap their arms around me and give me practical support. I’m lucky that I don’t struggle with drug and alcohol addiction – except overeating but that’s a story for another day. I’m lucky I had access to quality care. I dread to think what would happen if it was different. It’s hard enough recovering from a psychotic episode and the trauma of being sectioned, but to then be faced with discriminatory practices, homophobic behaviour, or feel like I was a drain on society. I think my whiteness and cisgender has a lot to do with this. I can’t forget that.
Bipolar doesn’t discriminate by age, gender, religious affiliation, or socioeconomic status. But I know the consequences that come from an episode or diagnosis can be discriminatory.
That’s why culturally sensitive paths to recovery should be non-negotiable. I love the four cornerstones (or sides) of Māori health: te whare tapa whā. As a model of health, it’s so much more comprehensive and holistic compared to our stale and lacking scientific/fix the individual obsession. I need pills and I probably will be on pills for the rest of my life but taking them is only the starting point. I need to work on my spiritual, physical and social wellbeing, too.
Having said that, pills most definitely have a place.
“Many people are reluctant to take medications because they think it means they are broken – that something’s wrong with them. In response, I tell them the Dr Shrand view of medicine. First, I ask ‘If you have a mountain to climb, will you do it in bare feet?’ Of course not. To climb a mountain you need the right equipment, and it doesn’t matter how much.”
(From Owning Bipolar: How Patients and Families Can Take Control of Bipolar Disorder by Michael G. Pipich.)
I just love this quote. Pills are the shoes that allow me to climb this recovery mountain. And it is a mountain. Not a bump. It’s rough and windy and dangerous and you need all the help you can get.
Still, pills can get a bad rap. They are polarising.
There’s the camp that says we should only work on our lifestyle change, our nutrition, our sleep and the way we move our body and interact with others. Then there’s the camp that says pills are the fix all – take these and you will be better.
In this conversation, I think I’m a moderate. A pragmatist. I used to really resent popping these pills – 400mg a night every night and avoid grapefruit and avoid alcohol and avoid trying to get up in the morning because that’s tough. But I’ve realised I can’t resent something that I do every day for the rest of my life. That’s just rife with misery.
I don’t like that I have to use all those foil containers. I don’t like that I have to pay a prescription fee or see the doctor every three months. It doesn’t feel all that sustainable.
But in balance, these things are a small price to pay to stop me going out on a spending binge. Staying up all night because the thoughts won’t stop jumping around my brain. The depression that tells me lies like I’m worthless or better off dead.
I will take that trade-off, thank you.
Pills come with side effects, and they are not insignificant – weight gain, sedation (although this is a side effect I’m down with and I take them at night for this reason), inability to stop moving, involuntary twitches. Also, for many people living with bipolar it can be a long road of trial and error to find the right pills at the right dosage.
And when you reach the right dosage, it doesn’t mean it will always be the right dosage. There are times when I’ve been able to go below 400mg – I think I reached 350mg – and now the two weeks before my period I’m up to 450mg.
I used to measure my progress by how low can you go, how low can you go. Like a limbo line for my meds. But now I don’t measure my progress (read self-worth) by how many mg I have to pop. I measure my progress by how I speak to my husband about money, how I don’t run to punishing myself as a reaction to conflict, how I can take constructive criticism from my clients, how I don’t get triggered when my daughter cries or is unpleasant. That’s real progress. The numbers are just that – numbers.
It’s been a long road to get to this level of acceptance. I’m not saying that my mind won’t change and that I won’t struggle in the future. But, right now, I feel ok with me and where I’m at with my recovery.
Instead of being cross with bipolar, angry that it’s destroyed my life and taken away my freedoms and my choices and opportunities, I remember who I am and how far I’ve come. I’m proud I live with bipolar. Not necessarily proud of bipolar, but like Fisher, I acknowledge I’ve got sizeable balls!
It means I’ve gone through a lot. It means I am resilient and capable. It means I can empathise with people in emotional pain. It means I can relate to people who have an underlying health condition which means they have to plan and live around appointments.
I know the prognosis for bipolar isn’t always great. The potential for suicide is at least twenty times higher among people with bipolar compared to everybody else. That’s horrific.
But I have to be optimistic – what other choice is there? I have to keep on putting one foot in front of the other. I have to speak my truth, hoping and praying that my essays say the right thing, reaching the right people at the right time.