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What I Didn’t Realise About Being Diagnosed With Bipolar Disorder

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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.

The cost

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.

The brainpower

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 Todayupstart and The Change Blog. To read more of her IBPF posts, click here

Comments

Young when you're diagnosed with bipolar and here I am 71 and nothing has changed for me. I'm mostly by myself. Gave up trying to explain bipolar. No one wants to hear it or they don't try to understand it. Even my family,, thankful for my greyhound, Magicfullmoon. She loves me...

Judith, I'm sorry you have no support. That's really tough. Are there any support groups either in your area or if not, perhaps online? You are not alone. I hope you find others you can share experiences with.

The day I was diagnosed with bipolar disorder, I bought Patty Duke's book "A Brilliant Madness" so I could learn about the illness. I wrote on the inside cover, "I was diagnosed today, Good Friday, 1993 with bipolar disorder. Thank God I know what's wrong with me!" I was 42 and had lost family and college teaching career because of a major manic episode that took me to Hollywood under the delusion I could earn a living as a film and television actor. I took a long bus ride home when depression returned hoping to save marriage and career, but life as I knew was gone. It took until 2010 before I finally got a handle on managing the illness and that it took more than medication alone.

Hi Sally
Thanks for the read.
I so related to your experiences with dealing with BiPolar.

Thank you for this article. This is an accurate description of what my life evolves around.
Part of me thought that no one else goes thru what I do.
At times I feel crazy and wonder if other people go thru the same thing.
It's hard to enjoy myself when I have to focus on my mental health and what different situations will cause a relapse.
I exhaust myself and it's hard to cope, but I try to focus on the positive things that are going on at the moment, because I know it can change in a blink of the eye.
I appreciate your journey and I hope I can follow you and read other articles that you write.
Thank you!

Love your artical about what you don't realize about being bipolar, that part where u said with everything u do u have to evaluate it's potential for making u unwell. Very good artical.

Thank you for sharing your experience. I have two bipolar daughters. They are now 20 and 16, both diagnosed in their early teens. I have witnessed a lot of what you wrote about as their mother and caregiver. I have learned over the years how to also be their advocate. Many times I have to stop and analyze a situation and ask myself, "if my child was suffering from a physical disability, would I speak up? would I ask for an accommodation or for understanding or help?" And when the answer is yes, I do. But it isn't easy. I have now experienced advocating for my daughters and educating school personnel in middle school, high school, and college. It's just not a condition well understood, especially since they were diagnosed so young. Trying to explain that my daughter isn't nodding off in class because she stayed up partying, but because she took and antipsychotic immediately after finishing her homework and that she physically cannot help being sedated... Well, some were understanding and some just were not. I honestly believe the only way to overcome this is through openness. Articles like yours. People like you sharing real struggles. So I thank you, on behalf of my daughters and their future lives as adults dealing with bipolar. And thank you from me, their mom and their advocate.

Thank you for your comment! I too, have a 15 daughter diagnosed with bipolar and have had the same exact mind set as you! If I don't stick up and educate people and get my daughter the help she needs, who will? We are in a sad, crazy journey now however, she is safe! This illness has opened my eyes to the truely thousands of people who are lost in the cracks! It's so sad to see! I have a new role on life and with Gods planning I hope to some how make a difference and to bethe voice of those who can't! Please pray that I follow His lead and doors continue to open to get changes in our world regarding mental health!!! Thank you,
Mo4girls

save for rowan reference

You are amazing Sally. Just to be able to articulate so well your personal experience with this wretched illness. I've learned over the years we must embrace all things bipolar because it truely gives us insight and empathy we would otherwise not have.
As i said you are both amazing and brave.please keep sharing these insights with the world because it needs to understand the real stuggles of mental health. Thank you gorgeous lady x

Thank-you Rosie!xx

I am sorry to hear of the difficulties you have faced. I also have bipolar but mine is not as severe. I get month long or loner manic episodes but they are able to be managed by low doses of one medication in combination with self reflection, a psychologist and partner/family support. Since I have had medication I am able to manage it very well. And have only had a handful of days off work. I find the depressive episodes harder.

The loss of people. I have lost many friends as I share my story, love the end of this article, we have both shared real moments of connection:)

Thank you for sharing the experience. I was diagnosed with bipolar quite late, in my mid 30s, following a marriage breakdown. I slipped into a manic episode and because I suffered with depression before, the diagnoses of bipolar seemed natural way to go for the doctors. I had really hard time accepting the diagnosis and didn't want to take medication. I had to be hospitalised for 2.5 months but it took much longer to recover and find my feet again. 5 years on I haven't had another manic episode, what's more my depression and annxiety that I suffered with since I can remember seems to Essex up a lot. I am managing for 2 years without any mood stabilisers or anydepresants just good diet, exercise, plenty of rest and regular work pattern, trying to avoid stress. Life's after diagnosis is not perfect but it gets better, even if initially it seems like it never will. I learnt to live with bipolar rather than suffer from it. I wish you the same.

Sally, you are so lucky to have the support of your family. I am sorry the meds have a daily effect on you and your cognition. I got tardive dyskinesia and struggle with prediabetes from atypical antipsychotics. However, had I been able to tolerate lithium for twenty years, I might not be as healthy at 55 as I am today. In the United States, only half the psychiatrists take insurance. The clinically seasoned develop a private practice and eventually go 'all cash.' I've had same shrink 18 years..and in that time, for various reasons, I've gotten 12 second opinions and I'm not impress with the people I've seen. Tons of stigma with tardive, even though right now, my symptoms are in control. Family not so supportive, thinks the medical expenses are neurotic, frivolous, etc. You are interesting, being in the medical field yet having bipolar. I was a medical transcriptionist for the last two years I worked before I finally fell into a hole so deep I had to resign and apply for Disability insurance, which I received immediately. Keep on writing. You're doing great work.

I would have to agree with you on a number of points including the strict sleep regimen. I am in my early 30's now and find that I operate better when I structure my day as a morning person. My wife on the other hand is a night owl so it's been a challenge to sync out schedules like we want to. If I have 2-3 restless nights then I need to take some melatonin or use the blue light blockers to regulate my sleep, otherwise I will tip manic.

I would like to add that while we face many unique challenges, we need to face them with courage. It's easy to give into hopelessness and despair, but we mustn't do that. We can tackle the sleep problem with confidence, even the medication problem can improve. It takes patience, work, and more patience but I would encourage all who are dealing with symptoms and side effects to maintain what hope they can to live a better life, one day at a time.

I have cars repossessions kicked out apartments due to my manic money spending I see forward of days spent in the hospital because I feel like flipping out sometimes. The sad thing is I have a job high stressed and I have to be unemployed before I can get help or relief and I take meds regularly

For20yrs I struggled with life & relationships. For the past 5yrs knowing I suffer from bipolar, it's still a struggle and work in progress. The stress is the hardest to cope with. It sends me into s manic frenzy. It's just maddening for lack of better words. Thank you, I needed to know that I'm not alone.

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