Recently I gave a keynote presentation at the Victorian Collaborative Mental Health Nursing Conference in Australia. It was amazing and inspirational to see the great work so many mental health nurses are doing. The title of my keynote was ‘World Changing’. This title had two meanings. My keynote was about therapeutic relationships and the people who have changed my world for the better over the past five years.
However, the title also refers to how being diagnosed with bipolar has changed my world. Six years ago, after reading about bipolar disorder in one of my nursing textbooks, I suspected that I suffered from the condition. However, there was no way I could have fathomed how being diagnosed with bipolar disorder would change my world – no textbook could convey or prepare someone for that.
When I was diagnosed with bipolar, I was initially relieved and I thought that it would be no big deal – I’d take the medication, engage with therapy, and I would continue with my life. Well, I very quickly realised how naïve that view of bipolar management was. It wasn’t long before I realised what it actually meant to be diagnosed with bipolar disorder:
The strict sleep routine
As my bipolar disorder became more severe I began to notice how sensitive I was to sleep disruptions. When I returned to working shift work after my first hospitalisation, I thought, “I’ll just make sure I have a regular sleep routine when I’m not working shift work”, which was wishful thinking as I was working close to full time hours and doing night shifts as well. I didn’t realise how strict my sleep routine had to be, or how restrictive having a bedtime as a young adult is. I’ve had to cut short or miss out on a lot of social events because of my sensitive circadian rhythm. Now, if I have a few nights of little sleep, I can feel myself becoming increasingly elevated by the hour, or if I’m depressed, I’m completely fatigued and can’t function.
The medication side effects
Being prescribed medication was another thing I didn’t think was a big deal. Maybe that was because I already had been taking medication for a few years for what everyone thought was depression. However, the side effects of the anti-depressants in isolation were nothing compared to the side effects of the combination and dosage and of the mood stabilisers, anti-psychotics and anti-depressants. The grogginess at times is so debilitating. It’s like you are physically unwell. So is the constant dry mouth and intermittent nausea. I never knew how disruptive tremors were and how they can turn the little daily activities you never thought twice about (such as brushing your teeth or eating) into mammoth tasks that take twice as long to complete.
The recovery time
Until you experience it yourself, there is no way you could completely comprehend the amount of time and hard work it takes to recover from a severe mood episode. The first time I was in hospital was for three weeks. When I was discharged I thought that I was back to normal, but it took at least twice as long to recover from that hospitalisation and regain full functioning. If I am unwell for a few months, I know it could take at least six months to build myself up to how I was functioning prior to that episode. If I have a manic episode, I know it could be a year, because you have to factor in the potential subsequent depression and then the recovery time for that.
This is both the economic cost and cost of time. My medications cost a couple of hundred dollars a month. I have fortnightly appointments with my psychiatrist, which up until a year ago I paid for (now I don’t have to because the government subsidises them). I hate to think how much money I could have saved over the years. I spend a few hours a fortnight with healthcare professionals and while I enjoy these appointments, I have to factor them around work, study and socialising. And then you have the weeks and months you spend in hospital.
It’s unfair that the onset of bipolar is typically late teens or early twenties, a time where people usually enjoy life without abandon or many responsibilities. Being diagnosed with bipolar in your early twenties means you have to be responsible for your health when most other people your age don’t. With everything I do, I have to evaluate it’s potential for making me unwell before making a decision. Travel? The change in time zones, jet lag and weather can make me unwell; what if I become unwell while I’m away from my family and psychiatrist? Further study? What if I become unwell halfway through and can’t complete it? Job offer? What if the stress tips me into mania or pushes me into depression? Everyday I am always evaluating my choices in regards to my health, and it takes up a lot of my brainpower.
The loss of people
This is the most painful one. You know who your true friends are once you’ve had a severe manic or depressive episode. Perhaps naively I hadn’t thought about the impact bipolar can have on relationships, or maybe I thought I was immune to it.
I know this sounds all doom and gloom and sometimes it is, but I have also experienced real moments of joy amongst all of this – moments that wouldn’t have happened if I didn’t have bipolar. And it’s these moments I focus on when the implications of being diagnosed with bipolar weigh me down.
Sally also blogs for bp Magazine and The Mighty and has written for Youth Today, upstart and The Change Blog. To read more of her IBPF posts, click here.