Lived Experience Forum

[KirSa_EnigmA]

Hi everyone, 

tl;dr: Psychatrist diagnosed me with "Likely Bipolar Disorder Type 1" a few weeks ago and I don't know what to do or who I am anymore. (Pls help with navigating: GP, counselling, psychologist/psychiatrist, centrelink, job network, income protection and TPD claim?)  

Long version: 

I've spent 20+ years being treated for alcohol use disorder, largely unsuccessfully.  My behaviour is not alcohol dependence, but to drink heavily - once - every few months. 

It's very difficult to explain this to anyone.  No, I'm not an alcoholic.  I just get to the point where I can't handle things any more and drink to get relief. 

I've often suspected "Bipolar" was a good description.  I've had others say so often in the past.  I was even diagnosed in my 20s and given meds, but at the time I was seeking crisis accomodation and needed the psych eval to qualify.  I left all that behind once I found somewhere else to stay.  

I've been to a handful of rehabs.  Many courses. Read a LOT on addiction and alcohol use.  

About 9 months ago I got very low and could not see a way out.  This endless cycle of trying to live 'normally' - 9-5 job, steady relationships, keeping many balls in the air, so to speak... seems impossible for me.  I have tried so, so many times.  Countless business startups. Countless hobbies, relationships, jobs.  Eventually: bankruptcy.

So after I left my last job (again, dispute with management over some injustice - a regular occurance for me), I sought help from the GP.  It took months to get in to see a psychiatrist.  He was into ACT - acceptance and committment therapy.  Basically, life's tough, set some goals, and get on with it.  I agreed, I mean. I'm 47 and a bloke from the bush.  Damn right. That's how the world works, right? 

Still... harder than it sounds, it seems. 

Finally, a psychiatrist diagnoses me with "Likely Bipolar 1" - the 'Likely' confuses me. 

My GP just wants me to take medication. 

Centrelink doesn't seem to recognise my declaration of a medical condition because it has "Alcohol use disorder" on it.  They think I just need rehab.  But I've been to at least 5 over the years. 

I've been informed that I may be able to make a claim with my super fund for income protection and a TPD (Total permenant disability) claim.  The payout would be amazing but I'm confused as hell about what's going on.  I haven't known myself as any different, but now I'm permenantly disabled because I'm bipolar?!  

The stress is not good for me.  The more of it there is, the more likely I am to crack and either just fold into nothing or go haywire and do everything all at once to try and understand, control and solve the situation (along with a tendency to want to achieve immortality and save the world - no kidding).  

So, I know this has been a bit of a ramble... 

I came here because it seems the other forums I've tried are pretty tame and my sh*t is a bit over their heads. 

I'm pretty skeptical anyway so I don't expect much.  

I'd just like to talk to anyone who's gone through any of this so I can get some clarity for myself. 

I woke up yelling after a terrifying dream last night and there's clearly something very wrong with me. 

What do I do? 

[Jynx]

Hi @KirSa_EnigmA welcome to the forums! I hope you find it to be a warm and welcoming community. We have some tips & tricks for newbies here if you like!

It sounds like you've had a really long journey fraught with frustration. Seems you've been slapped with a few labels and not really found acceptance and support. Diagnoses aren't supposed to be something that defines us, they're supposed to be guidelines for treatment. So like, if you're not an alcoholic and struggle more with binge drinking, getting treatment designed for those drinking every day isn't really going to help, hey? This is potentially why the 'likely' is there - your doc doesn't want to make that diagnosis official until they explore whether or not you respond well to the treatments designed for bipolar. Doesn't make it easier on you though! Having clarity definitely helps. If it makes sense for your experiences, it definitely could be worth diving deeper. We've got info about bipolar if you're interested.

Medication doesn't work for everyone, and meds are also most effective when combined with ongoing therapy as well. Do you still see your ACT psych? If you're looking for a new therapist, you can go via GP to get a mental health care plan and a referral to a psychologist. You can also seek out your own using online databases, which can be good if you want to look for something more specific (for instance you could seek out someone who specialises in bipolar). Two that I know of here and here.

I'm not sure how to help with Centrelink or TPD claim unfortunately but some others here might. You're also welcome to give our support line a buzz (1800 187 263, Mon-Fri 10am-8pm) to help you explore more options. It can help to talk it all through with someone; what's shareable is bearable I always say.

I hope you find what you're looking for in the community, and feel free to reach out to us if you have any queries. 

[KirSa_EnigmA]

Hi Jynx, 

Thanks for the welcome. 

Yes, I find the labels concerning. I've seen many people identify with their diagnosis to the point that they're using it as an excuse, or justification.  "My Bipolar" or "My Depression" etc.  But, there has to be a way to identify the set of symptoms each of us display so we can talk about them, I guess. When there's crossover it seems like the industry professionals don't know wtf they're doing, if I'm being honest.  And yeah, it's very frustrating.  

Looking at my life with the framework of 'Bipolar" though seems much more fitting. I took another look at the resources you shared, in particular the criteria for mania, and looked back on my life to see if I fit the description and it's without a doubt a yes.  I intend to ask some people close to me to tell me honestly if I fit the description in their eye too.  Just to check and see if I'm not just 'self identifying' like it's some kind of horoscope (honestly, they read this way to me).

To be clear, I've never thought of my moods as manic, although I've been described as such.  One girlfriend said to me once: "When you get going, it's like the rest of the world is standing still". But it's normal for me. I don't know any different.  So it's weird to think of this as aberrant behaviour. 

But let's take a closer look: 

A manic episode involves three or more of the following:  

• Very high self-esteem, confidence, or sense of importance  -  Absolutely.  I'm arrogant and confident.  I lead constantly and consider everyone below me, and needing my care.  I can see and understand more, have more control, awareness and ability.  I often feel like I could walk into a place and be running the show in no time, but I set my sights even higher (see final point below).

• Needing less sleep -  This varies, but when I'm motivated, I tend to wake early - 4-5am - and get straight to work before everyone else gets up and becomes a distraction.  People tend to irritate me or get in my way. I often wake up at about 2am and can't get back to sleep because my mind gets busy. 

• Being very talkative -  My words can't keep up with my mind.  I often become out of breath and anxious trying to vocalise the integrations my brain is making.  

• Racing thoughts -  My brain reaches to the furthest and widest conceptualisations I can fathom, and into the most specific details, then seeks common denominators and patterns to create new ideas. Often times this becomes too challenging and I cannot grasp the complexity.  I become irritable, confused, overwhelmed, and frustrated.  

• Being easily distractible  -  I have trained my mind to be very focussed, but when other noises, or motion enters my field I become very annoyed and distracted.  Others don't understand the need for quiet and stillness while I think.  They don't know the depths I'm working with. If there are distractions, I forget simple things, like leave the house without things I need.  My mind is elsewhere.

• Increased goal-directed activity, or agitation  -  Agitation as mentioned above.  Highly proactive and goal directed.  Lists, whiteboards, many books cross referenced at once. My whole life is reorganised to support the new goal/project/business venture/career/lifestyle. 

• Risky behaviour or doing something reckless   -  During, I tend to direct all resources into my projects/ideas.   Often overspend or invest.  Rarely recoup costs.  Generally, when I'm overwhelmed at the peak of my manic (let's call it what it is) experience, I drink heavily to put the fire out.  My brain feels hot... my stomach churns... I pace the room, sometimes debating myself for days before eventually caving to quell the storm. 

• Many people also experience symptoms of psychosis, such as hallucinations or delusions, during mania.  -  I am not aware of psychosis or hallucinations during this experience, but 'delusions of grandeur' might be consistent with this description. I seek immortality... to escape death. 

So, while I haven't said this out loud to anyone before in as much detail.  I think maybe it comes across quite clearly to those who know me.  

Anyway... to continue: 

I don't see the ACT psychologist (I mistakenly said psychiatrist above - this bloke is a psychologist who specialises in substance abuse) any more.  He would schedule appointments the night before and when I said I was unavailable (had kids in my care, had birthday etc) he said I was hard to work with to the GP.  He was on speakerphone when the GP called him and I told him quite freely that he was full of sh*t.  /shrug.  

I do see a support worker / counselor every few weeks though. She's great but it's taken me a long time to trust her. 

I am seeing the GP next week and have a double appointment so will be discussing ongoing support from my counselor.  I am struggling to get the correct forms for centrelink as they're just a pain to deal with.  But I will persist.  I'm really just angry that the system that's there to support people involves so much bureaucracy that it becomes nearly impossible for someone who NEEDS the support to navigate it. To make it worse, one hand rarely knows what the other is doing, so you can never get any clear direction. 

I've employed some lawyers to act on my behalf (no win-no fee) with the super insurance claim.  Honestly, I've spent the past 10 years dealing with lawyers for one thing or another and I'm not interested in taking this on myself.  If I'm no insane now, I would be after another year of dealing with them. 

I will call the support line you shared sometime this week too, I think.  Maybe they will have some ideas on how I can work through all this.  

It's been good to write all this down, so thanks again for listening. 🙂 

[Dez2]

Hi, there's a big mistake understanding with Bipolar 1 & 2 & extremes with both diagnosis. I have Bipolar 2

You read very similar to myself & past. I have PTSD from past experiences. Bipolar 1 is more delusional. 2 is more depressive but still highs with extreme lows. Difficult decision making & so on. Do you know why you would be a type 1 & not a 2.

I was diagnosed about 7 yrs ago. 

[Dez2]

I'm 43 self employed most of my life. I recently, Sept last year was approved for the Disability pension. QLD. It's no different to ACT. I have a past of alcohol misuse. I reckon I can help you with questions

[Jynx]

Hey @Dez2 and @KirSa_EnigmA just a hot little tip - if you want someone to get a notification that you've responded to them, you can use the @ key to bring up a list of people who have recently posted in the thread - select the person you want to notify so their name shows up in blue (you can also hit @ then type their name in). 

Thanks for sharing a little more about your experiences @KirSa_EnigmA, it sounds like there's a lot in the diagnosis that does resonate with your experiences. I hope you're able to take your time processing the info and that it leads you to a greater understanding of yourself - and hopefully also some better coping tools and treatment outcomes. I also applaud your logical approach in trying not to overidentify, and getting some input from others along the way. 

I wholeheartedly agree that the systems that are supposed to support us have huge accessibility barriers, seemingly locking out the folks who likely need it the most. It's incredibly frustrating and I hope you find your way through it. It makes me angry too. 

Thanks to you both for sharing and openness, and hope you find some solace in knowing you're not alone in your experiences 😊

[KirSa_EnigmA]

@Dez2 thanks so much for your reply.

I'm not home tonight but will take some time tomorrow to ask some more specific questions to pick your brain. Very much appreciated! 

[Dez2]

No rush. Most everyone with a mental health diagnosis tend to misuse either drugs or alcohol/ both. I Was told I'd never be accepted for Disability pension for mental illness. I gave it a go. I was approved. It sadly can be a bit like Telstra. You got to get the right person to help

[KirSa_EnigmA]

I've only just seen this comment @Dez2

I think the reason is the multiple hospital visits due to injury while in mania. While at the time, I'm intoxicated, the underlying cause is the manic episode.

I think the other thing might be the seeking immortality bit.

I was honestly surprised with the bipolar 1 diagnosis too.

My ups are quite extreme at their peak too.

[KirSa_EnigmA]

@Jynx thanks for your comment. The linking of names is useful.

Hoping to get some more clarity on how to approach things here. So far so good. 😁