Lived Experience Forum

[Fish]

Hi there

Earlier this year, I was diagnosed with bipolar II. I've had one or two major depressive episodes each year since about 17 (I'm 29 now). The worst episodes have left me suicidal, though I've always had good social supports and I've never made an attempt. At my lowest, I am catatonic. This has led to me losing jobs and failing uni (though with excellent support from a university disability service, I finally managed to graduate two years ago).

Alongside these episodes, I've had about half a dozen periods of three or four weeks when I have enormous amounts of energy. I get full of plans, and tend to make big financial commitments. I tried to buy a house in one episode, despite working in a fast food chain and having no savings. Another time I quit a job on the spot, got on a train, and got halfway to Singapore before I ran out of money. In the most recent episode (preceding the bipolar diagnosis), I had plans to go to space. During these times, I sleep only 4 or 5 hours a night and don't feel tired. My thinking feels miraculously clear and I'm confident that everything I do will work out. I'm much more sociable (I'm usually very introverted and quiet), and I've said and done some outrageous things in public (too embarrassing to mention here). I am physically energetic and if I don't keep myself busy I tend to pace and compulsively shake my hands around.

I've tried my absolute best to make a decent life for myself. I have an honours degree in law and I briefly held a teaching position at a good university. I've volunteered for humanitarian organisations and won scholarships for community involvement. I'm very close to my family and I have good friends. But all told, after all the highs and lows, I'm now unemployed, recently out of hospital, living off Newstart Allowance, and sleeping in my childhood bedroom. I feel like a defective adult.

I spent six months in CBT last year, and it helped me with a lot of problematic thinking and behaviour. However, this year's mood swings have been the most extreme I've ever had. In March, my psychiatrist started me on a mood stabiliser which I took until a GP, on the advice of another psychiatrist I was due to see as part of post-hospital follow-up, asked me to taper off then stop. The meds seemed to stop the ups but not the downs. Since stopping it, my mood has been bouncing around like a yo-yo, with about two changes a day. The swings are less extreme than the longer episodes: the highs are not quite as high, but they still have that edge of excess and urgency, and the lows are not catatonic (like I was when I got out of hospital six weeks ago), but they leave me questioning the point of life.

I saw the psychiatrist yesterday, and she told me I have cyclothymic personality disorder, and that no medications would help me. She made this diagnosis after less than 40 minutes, and without asking me about the extent of my depressive episodes. She sent me out and suggested I try meditation and counselling.

I have serious doubts about this diagnosis. I've read that cyclothymia involves feeling "somewhat down", and this feels like a trivialisation of my depressive episodes. I am also sceptical that the psychiatrist could make an accurate diagnosis so quickly and with so little information.

On top of that, I'm exhausted by the medical system. I had a terrible experience in hospital, and I've now been taken off the only medications that were somewhat helpful, on the recommendation of someone who seemed to want to rush me out of her office. I can't afford insurance, so I have to wait up to six months to get a second opinion. In the meantime, I am terrified of what I will do to myself, and I can't move on with my life.

It helps just to share this with people who might relate. I'd love to hear how my experience compares to other people's experience of bipolar II or cyclothymia. I also want to know if there are any treatments that help with these symptoms. I'm about to move interstate again (back to where I went to uni) to get back to my old doctors and psychologist, but in the meantime I just need to know that this is not going to be a neverending cycle.

Thanks for reading 🙂

Fish

[Nikolai]

Hi @Fish

I am really sorry to hear that you are having trouble getting a diagnosis you are comfortable with. All I can suggest is wait until you can get your second opinion unfortunately.

My main diagnosis is Bipolar II. I have been suffering from it since I was 14 (I am 25 now). I have a strong family history of bipolar so it was not at all unexpected when I was diagnosed. Depressive episodes are the main feature for me. I rapid cycle between episodes of depression and eythymia with a few hypomanics along the way. Generally having about 12 depressive episodes per year, averaging about 2 weeks each episode.
My main treatment is medication. It helps a lot but it doesn't fix the illness completely (of course). It does however allow me to function at a much better level in my day to day life.

-N

[Zahlia]

Hi @Fish 

Thanks for sharing your story with us, I'm too am sorry you are finding it hard to get a diagnosis. It must seem like your a bit 'stuck' at the moment... Waiting for a second opinion, not knowing what to do next. You have had a rough few years with your MI, don't be too hard on yourself, jobs will come and go.

I thought you might like to read this thread I've found here where @theaveragejoe talks about their Cyclothymia. Maybe they can share some of their experiences with you? I know @BeYo was also diagnosed with Cyclothymia so maybe they have some input as well!

Zahlia

[mrkotter]

Hi @Fish

I also have bipolar. I am doing well and working a career that I wanted before I got unwell. Bipolar doesn't really impact my life anymore. I was in a similar position to you a couple of years ago.

It does get better.

It gets so much better. I promise you that. 

I know how you are feeling. Your statement about feeling like a defective adult rings very true to me. I also have a university degree and I was ill for the longest time. I felt like I was wasting my potential. Although I knew I was ill I couldn't reconcile it with how badly I was doing career wise. 

Truthfully I would totally disregard what that psychiatrist said - go find another one. I think you need to trust your instincts on this. If medication worked then clearly its for you. Without going into specifics here a lot of people with bipolar are on more than one mood stabiliser to control their symptoms. I know this is the case for me. 

When I felt like giving up I found a book by Kay Redfield Jamison called 'An Unquiet Mind'. She is probably one of two world experts in bipolar disorder and is a professor at John Hopkins. She has bipolar disorder. She is a role model for me because she showed me that it is possible to achieve (and achieve things most people never will) even if you do have bipolar.  

 Happy to talk more if you want. 

[Lissette]

Thank you for your msg, I will buy the book and have a read. It's nice to know that you are Ok and that bipolar don't rule your life.

[Lissette]

Hi, I understand you complete it, I got the some, every two weeks I get depressed 👎, sucks

[Lissette]

Hi @Fish:
For my experience, I suffer the some and I'm bipolar II disorder. You describe my life, I do terrible things if I'm without meds, meds help but I'm still have my high that I sleep very little, spend lots of money, book for holidays, socialise a lot. In my lows, I can't clean, cook, lost confidence at work, have not placers, sleep a lot and do not talk one word. It's hard but I do my best, my changes are every two weeks, I do have normal episode sometimes too but not as often that I wish. I don't understand why you have to wait 6 months to see other doctor. If you need my help to pay for your psquiatric I'll give you a hand, your health it's a priority.
Take care👍

[Fish]

Thanks @mrkotter. I really needed to hear that from someone who's been there. I'm glad you're doing well and have a good career.

I'll try and find that book. The suggestion reminded me of an article I read recently by Paul Dalio, whose film Touched with Fire was inspired by Jamison's work. Probably time to put that one on my watchlist.

It really is hard to accept the fact that my current career trainwreck is caused by an illness. I'd love to believe it. I really would. It would be so nice to comfort myself by saying that I'm not weaker or less talented than my classmates and colleagues - just dealing with something they're not.

The problem with that is that my thinking feels rational to me (even when it's probably not). I can't accept that I'm ill when it feels like I'm making conscious decisions. No matter how many times my friends and family tell me otherwise, I keep blaming myself for not having my act together. 

This is probably an area for more CBT, but in the meantime I'm glad to hear it gets better.

[Fish]

Hi @Lissette, thanks for your words of support. I'm sorry to hear that you're having the same awful highs and lows - I definitely relate to what you're describing. I hope things pick up for you.

[Fish]

Hi @Nikolai, thanks for sharing your experience. Cycling that quickly must be exhausting. 

I'm glad to hear there's medication that helps. I'm looking forward to seeing another psychiatrist and hopefully finding something to make the moods less extreme.