Autism, Distrust of Doctors, and Mental Health Awareness Campaigns

Trigger warning: mentions suicide, too many times.

Recently Canada held its latest Bell Let’s Talk Day where people tweeted about mental health awareness and for every time #bellletstalk was tagged 5c was donated towards mental health services. Celebrities were especially vocal in getting the word out. William Shatner had tweeted about it with that hashtag about 12 twelve times before I even caught on. When I got the gist I was reminded of R U OK? Day, which we have in Australia so I thought I’d like to join in. But as I read through the many tweets they seemed to be statements I’ve heard many times before.

Such things like:

“because mental health is real.”

“it’s ok to not be ok.”

“it gets better.”

“all it takes is asking someone ‘are you ok?’ to make them feel better.”

It made it hard to post anything because I didn’t want to post anything too graphic or disturbing.

Eventually I went with: “Had rampant suicidal thoughts earlier but got through it. As always. Keep moving on” #nostigma #bellletstalk

40 minutes earlier I had constant suicidal thoughts and was in such a deep state of depression I couldn’t move. So, can you imagine how I felt for someone to write “it’s ok to not be ok?” Sure, it’s ok to not be ok…until you want to commit self-harm. It’s very hard for me to tell the difference between sadness and clinical depression, just like it’s hard for me to tell the difference between happy and hypomanic, and all those emotions in between.

Don’t get me wrong. It’s great that people supported this and worked hard to end the stigma around mental illness, and drowned out the voices of the denialists and trolls, and I’m especially grateful for celebrities that helped get the word out to their millions of fans, but as someone who personally experiences mental health issues I felt like I wasn’t counted in the conversation. I’ve moved past the whole ‘mental illness is real’ thing and I just thought after all these years of mental health awareness we had reached the next step to actually talk about mental health; the symptoms, the heart ache and to actually engage with the suffering. That’s what was so important about #BellLetsActuallyTalk – it opened up the conversation to people with lived with mental health issues everyday. What started as people of colour having a say in a day they felt left out of, soon contributions from all ranges of minorities came in and real sufferers of mental health issues and I took the opportunity to spout all my frustrations with biased and incompetent doctors. I ended it with asking everyone whether disabled people with mental health issues were counted in #BellLetsActuallyTalk as well.

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All the Bell Let’s Talk stuff actually distracted me from what I planned to dedicate my entire Australia Day doing, and that was teaching people about Aboriginal Australians, especially their horrid history under English colonisation and their current situation in the communities but by the end of the day I actually didn’t want to change the date or even abolish Australia Day. But more on that later.

For years I have been dealing with doctors who wouldn’t take my concerns seriously. It’s hard enough to have poor communication skills from autism and difficulty even getting words out in a clear concise way because of chronic illness, but then having a doctor disregard it because they don’t think you’re even self-aware enough to know what’s going on, is frustrating and discourages me to keep going to the doctor when I even have physical health issues.

The very first time it happened was before I was even diagnosed with autism. It was along the way. I first thought I may have dyslexia and the psychologist I went to see was entirely dismissive and hit me with a severe depression and severe anxiety label – all from doing an IQ test. This was back in the day when dyslexia was only diagnosed to people with an IQ of 80 or under.  Another time was when I had a painful and constant tinnitus. The doctor looked in my ear and said I said some wax and left it at that. The same doctor was in complete denial when I thought I may have hypoglycemia and asked for a referral to see neurologist because I was having seizures. My psychiatrist didn’t believe me either and it took me a few years to realise that the reason was probably because I reported it as a side effect to Ritalin. The doctor who made me come to that realisation said that there wasn’t anything wrong with having extreme sensitivity to light, and said it’s better to wear sunglasses everywhere to protect my eyes from the sun. Medical professionals don’t like it when you say something nasty about those drugs they’re paid to prescribe you.

None of them were as dismissive as my psychiatrist though. I have cyclic moods, which is basically what I call undiagnosed symptoms of bipolar. My psychiatrist has refused to even asses me for it despite the fact that my symptoms were ruining my life. You can imagine what untreated bipolar looks like. For a long time I saw my mania as a positive too. I couldn’t really commit to a project unless I was manic because I had more energy and more ideas just popping into my brain. In those last days I took Ritalin I just take it to get manic. I could cut a pill in half and still become manic but 20mg (less than 10 year olds are dosed with) was what I’d take to have complete wild ride and often ended up with me going into psychosis and an intense teeth grinding session.

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This photograph is a trigger.

Being deprived of the treatment I needed, my mum not believing me as much as my psychiatrist put me into a deep depression and I even used to tell him when I felt suicidal, right at that moment. I’d tell my mum that I felt so suicidal that I’d run out onto the busy road just outside the medical centre, and I was just ignored.

So I gave up. I gave up asking for help, for anything. I embraced my mania and it took a long time to see it as a negative. I let a GP put me back on anti-depressants so I could actually leave my house without having PTSD triggering and kill the delusional thoughts. It worked but 3 weeks later they made me hypomanic. I stayed on them for a year or two then thought it was probably best to have less hypomanic episodes, so I stopped taking the meds and now have less hypomanic episodes but now deal with short but intense depressive episodes.

For the 6-7 years I’ve been aware of my mental health issues I’ve had to develop my own coping mechanisms to deal with them and stay positive about where my life is heading, and just keep getting through everyday. There were no social lessons after my autism diagnosis. I’ve been teaching myself how to read body language, mimic it and how to start and keep conversations going and everything about social customs, except hierarchies because fuck that shit. I can learn social skills, apply them but I’m not joining the collective consciousness that tells you what’s a suitable subject to like, or a suitable way to dress and to only surround yourself with suitable people. If you’ve ever made fun of someone for liking a subject you felt was too nerdy or strange, or laughed at the way they dressed, or thought yourself smarter than them then you are a part of that consciousness.

Likewise, I’ve had to learn similar ways about how to minimize my symptoms of mental illness. It’s been less about learning things from others – although everything I’ve learned from social behaviour can help me regulate my own emotions around them – but is more about employing self-therapies like cognitive behavioural therapy or using the only helpful advice a psychologist told me about anxiety: the thoughts are in no way based in reality.

My seizures and hypoglycemia are controlled through strict dieting; no caffeine, very little alcohol, nothing high in sugar or salt. Because of my often low blood sugar I have to eat small meals every 1-2 hours, sometimes I can get away with not eating until 4 hours later. But if I put off eating when I begin to feel weak and light headed I can end up fainting, but usually just experience a lot of pain, particularly in the stomach and arm muscles. And migraines.

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Getting back to mental health awareness campaigns, I think they’re helpful, needed but they need to expand. They need to work out a way to include everyone who suffers from mental health issues and let people tell their stories. Every R U OK? Day I tell people to share their experience with mental illness. At first it was something I just ranted about but it took off and I just thought this isn’t such a bad thing to do. R U OK Day? is usually a day when people are encouraged to ask people ‘are you ok?’ and it angers me because they’re just doing it because they got told to, and they’re just going around asking everyone that. The day is actually about opening up the conversation on mental health so I’ve hijacked the day to encourage everyone going through mental illness to share their story, current feelings and where they think mental health awareness should be heading.

There was another mental health awareness campaign launched in Australia called Mental As. The ABC showed a range of programmes centered on various mental health issues from all walks of life. It was a great way to spread mental health awareness by showing how it affects a variety of people, like comedians, actual residents in a mental institution and people who were living normal lives that were disrupted by suddenly developing bipolar disorder, but there was a strong emphasis on mental illness being overcome or people handling their bipolar on medication. Happy endings are great and all but they don’t reflect the reality for many people in low socio-economic areas who can’t access or afford the services they desperately need, and don’t forget about what I said about biased doctors earlier.

Professor Sir Michael Marmot, director of the University College London’s Institute of Health and Equity, says that mental health issues are caused by the conditions of a lower working class, unemployment and lack of government spending towards public healthcare, and I think that can be true sometimes but I think for many of us those mental health issues are separate; genetic or triggered by the environment, and not just in the way Marmot thinks. I can certainly pinpoint the exact moments my mental health issues triggered because of environment stressors. I can give the date, time, location and even say what the type of weather was when my PTSD developed, but cannot give you any specifics of the actual event. Most of my anxiety and cyclic mood-like symptoms are basically permanent side effects to medication which is why I’m strongly opposed to drugs, all forms of medication except for codeine for severe muscle pain I experience.

But I’m not completely denying what Marmot says. Being low class and unemployed certainly adds to the stress and therefore exacerbates the symptoms of mental illness. I certainly experienced more suicidal thoughts when Tony Abbott proposed changes to the disability support pension and made all recipients under 35 years get re-assessed. Not one day went by when I didn’t feel extreme anxiety or depression. I even had a suicidal plan. My financial anxiety often got to that point in 2015. I actually became so manic that my words became unintelligible. It was my anxiety experienced during the assessment interview that made them decide to keep me of the DSP. And now with the Turnbull government forcing me to into work that has me two days a week looking for jobs that I don’t have stamina to do and none of the social skills the employer expects, I feel a mixture of anxiety, suicidal thoughts, apathy, and complete contempt of my job network consultants who are nothing but pawns of a Gilliard government plan to kick 400,000 disabled people off their pensions and into low paid work. They get no respect from me.

They could take a leaf out of the Centrelink whistleblower’s books and risk losing their jobs by doing the honorable thing and tell the public how much pressure the government wants them to put on people on disability and the dole to just get a job; bullying and  threatening to cut them off their payments at any sign of resistance. And believe me there’s a lot. Not a day goes by where not at least one person argues who gets passively aggressively talked down, or they end up storming out and risk getting their payment suspended.

There’s another source to my anxious and suicidal thoughts: Centrelink are through the Turnbull Liberal government using an automated system developed by the Labor government to weed out welfare cheats by comparing payments with income statements, and after they’ve found ‘evidence’ of the over payments they send out a letter declaring someone one welfare pay back up to $3000-$20,000 in over over payments. Problem is most of these declarations are false. It’s been proven that people either owe less or don’t owe any money at all, and at least 280,000 have received such letters, and the government has extended its number of victims to people on the aged care and disability support pension. People have already become suicidal over it but what do you expect will happen when they target people who are already dealing with suicidal thoughts? Now doing something as simple as checking the letter box gives me panic attacks.

So, there’s a lot more involved than just asking for help for mental health issues. Some people ask for help only to have their concerns shrugged off by doctors and there’s those who can’t even afford to get the right care, especially in Australia where GPs are refusing to bulk bill and the government tries more and more sneaky ways to privatize Medicare. I’m fortunate that I live close to a medical centre that still bulk bills. But with all the extra pressures of living with pre-existing mental health issues and living on handouts below the poverty line in low socio-economic areas with crime, deeply set racism, job instability and rising rates of unemployment and fearing that things will just get so much worse, there’s not a lot of hope people can have to receive treatment for their mental health issues even if they do ask for help.

UPDATE:

At the moment I am seeing a GP who is taking my concerns about having mitochondrial disease and chronic fatigue seriously. He has even given me bipolar assessment questions and has even tried to reassure me of my anxiety about having a blood test taken. And I’m finally looking into my foot pain from having very flat feet. It’s such a breath of fresh air to finally have a doctor that will listen to my concerns.

xSpycraft

2016 In Review

Most people looking back on 2016 only seems to have negative things to say about it, but for me 2016 was a year of getting out of a bad situation and a shitty job. I changed my new address and moved into a completely new neighbourhood, which was scary and I could have starved to death had I not accepted that change and adapted to it. I may have fallen into a deep and aimless depression, in which I thought all the skills that I built up over 11 years were now gone, but I fought it and I came out even stronger on the other side. My chronic fatigue may mean I get tired over doing 2-3 basic tasks and my likelihood of being employed even in a part time 8 hour per week job is pretty slim, but that doesn’t mean there isn’t an employer out there who is accommodating of my issues.

Sometimes I think those who complain the most about things are people who don’t have enough to complain about. I still have the same atypical brain, the same energy limitations and I’m in the same hopeless situation but I have a loving family who I will always get to see at the end of the year. Sure, things could be better in certain parts but I have to accept it and wait for things to get better.

This year I made new friends who understand my mental health issues and give me hope in times when I feel there is none, and in turn I support and offer them hope and practical advice, because after all I can’t help being myself. I’ve connected to two people in subjects that I struggled to find anyone to connect to. I made a promise and a plan to a higher power and have followed through with it quite nicely. And most importantly, the passion of storytelling that runs through every fiber of my being is no longer just another abandoned dream because it just felt too hard to do with all my problems that stood in the way of me pursuing my dream of being a published and well known author and screenwriter.

This year I had to face some hard truths about situations that I couldn’t change, and I had to accept that and move on from them. To not get into too many details I will say it involves a serious mental illness with such strong delusions that they had to be medicated away, and even after coming off medication certain things in my life have to be viewed in another perspective and avoided altogether just because some place my mind took me 3 years ago.

Life is hard. Life can be frustrating and seems to be unfair at times, but the year is not to blame; it’s your attitude towards the world. Social media breeds a culture that encourages pessimism and petty arguments. It’s no wonder we’re always so negative when we should really be grateful for all we have. Most of us have more positive things going for us than some people in truly dire situations, and despite all they struggle with they don’t complain – they just get on with it.

I can’t close this blog without mentioning yet again that one big change for me was getting back into political activism and that wouldn’t have happened without meeting members of Socialist Equality Party, Socialist Alternative and a much delayed interest in the band Anti-Flag. The U.S Election results may have helped some but the real seeds were planted from an encounter from the leader of the SEP on Election Day. Australia has been under right-wing leadership for two years so there’s been plenty of reasons for me to get active again. It’s not just about saving the Great Barrier Reef, Same Sex Marriage or closing Nauru anymore. Or those countless petitions I’ve signed against Bayer and Monsanto.

Now I feel like 2017 will be a year of war, a class war because if forcing people on disability to work wasn’t enough they’re going to cut the pension. 2016 for me was just a shake-up. It roused me up from my leftist coma and made me aware that the government really doesn’t care about its people and complacency will just endure our suffering.

Wow. That got kind of serious. This was meant to be a feelgood post even though I don’t really feel that positive about work or about pursuing my dreams lately. Hope can come from many places though; sometimes dreaming big, sometimes anger. I know these last few paragraphs sound contradictory to my ‘just be thankful with what you got’ theme but there’s a line to it. No one should allow themselves to be treated unfairly by those who rule over them. Everyday annoyances should be easy to shake off though.

For the last couple of years this blog has mainly been about my mental health issues and sometimes video games, but as this blog is basically a database of my thoughts, especially the troubling ones, things are going to have to change as I change. I might get political from time to time. This is the new (old) me and you’re just going to have to put up with it.

With ❤ Spycraft 

The Elephant in the Room is Bipolar

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In the wake of Robin Williams’s suicide something surprising has happened; sufferers of depression have come out of the shadows to share their struggles with this terrible illness. Even before this the stigma that has surrounded depression for many decades has begun to slowly be erased with sport athletes opening up about their struggles with depression. And now acceptance for depression as a real mental disorder is higher than ever and it coincides with ABC TV Australia’s announcement about a new initiative to raise awareness and end the stigma surrounding mental illness, which will happen in October. People have not only started to share their stories about living with depression but those who have been untreated for so long have finally gone out to seek help. Lifeline has been inundated with calls of people who may have been on the very brink of suicide. Real lives have been saved.

This is fantastic and I’m very happy to see the stigma of depression disappearing but I only wish the same would happen for sufferers of bipolar disorder. It’s well known that Robin Williams fits the description of someone with bipolar disorder. You just have to watch him in interviews. He himself has also called himself manic a number of times. Few who have that much hyperactivity rarely have bipolar disorder, unless they have ADHD but it begins in childhood and Robin was shy as a child, as was I – I’m actually glad we have that in common. One other I can think of on the bipolar spectrum who was shy as a child was 60s folk singer Phil Ochs who took his own life at 35.

Out of all my reading up of news articles about Robin Williams’s death only one says he was suspected to have bipolar. Now I’m not saying I know for sure what the cause of his depression was – we now know he had depression from having heart surgery and Parkinson’s disease – but I still think bipolar needs to be properly explained. There are still people out there who can’t understand how someone so funny could end his own life. And from some programs I’ve watched they have tried to find a link between comedians and depression. I used to think such things myself but it’s more likely the depression is manic depression.

I can understand why people would rather leave the bipolar issue out, because they want to remember the man as a man, not as a diagnosis or label. We can still say he struggled with bipolar as much as we are saying he suffered from depression. I just think it will help those confused by his suicide understand his choice a lot better. Soon I will talk in detail about bipolar, especially the depression as it manifests as a comedown from mania. First I want to talk about who Robin Williams was to me and how I will remember him.

The first memory I had of becoming familiar with the name ‘Robin Williams’ was from watching Aladdin. It was my favourite Disney film at the time. I love him as Genie and soon began to quote him every chance I got. Kids like me just loved the energy he gave to the role, the switching between personalities and I even got a bit choked up around his emotional moments. To adults on the outside I looked like an emotionless kid who didn’t have a clue what was going on around me. Later I would be diagnosed with autism. But when I could really connect with a character I began to empathise more, even if on the outside I was as solid and as expressionless as a rock.

I watched a lot of Robin’s family films in the 90s. His soft gentle voice made me think of him as either that favourite teacher or a father figure. Father figures would come in many forms for me as I didn’t see a lot of my father. I’m glad I didn’t see any of his stand up or his more adult movies because given my Christian upbringing I may have been turned off of him by it, but now that I’m an adult and have a pretty dirty mind myself and I had to push those thoughts deep down inside me while I attended church, I enjoy all that stuff now. I think his best film for me was Dead Poets Society even if my young eyes were focused more on the shy character Ethan Hawke played. I have not seen the film in years so I may have to revisit it. I just remember watching that movie over and over again and loving it. I loved Jack too because I loved how believable he was as a 10 year old. I was probably around that age myself when I saw the film. An adult that had the personality of a child was something I aspired to be, although I really didn’t have to put much work into it.

Like I mentioned before I was a shy child and I’m still surprised by how much I’ve changed. I used to tag along behind my friends and now I’m like the class clown. Sometimes I think my humor is a little bit too weird, too crude and about things no one can relate with, but people seem to like me. Now, I suspect I may have bipolar and the reason why I talk like I’m sure I have it is I don’t think I’ll ever be diagnosed or medicated for it properly. Doctors are either too biased so shut down my suggestions for an assessment just to rule it out, or unqualified, or their fees are too steep. It makes it hard for me to get help. And lately I’ve been wrestling with the thought that mania could actually be a bad thing. Last time I was constantly on the move for two days, I spent over $300 and I crashed so hard and it was my first depressive episode since being on anti-depressants but I’m always so energetic, the creative ideas come so fast they are spilling out of my brain, I’m more social, more willing to take risks and I just know people think I’m a lot of fun.

I also know I come up with questions people never want to answer, like would Robin Williams be the same without his mania? People who have received treatment for bipolar always seem to avoid talking about the good parts of mania and I tried my best to name it as a negative force, just a part of the mental illness, but I fell behind in my productivity. I’m a very logical person. I can put things together. It’s still a question I don’t want to answer. One could say if Robin Williams didn’t have mania he wouldn’t have killed himself, but maybe even without there would still be depression. I just remember when I was coming off Ritalin because it was basically speed to me and I knew it would take a whole lot away from me. I even warned people I might not be as social as I was on the meds. That didn’t exactly happen. The change was permanent. The only difference was I didn’t speed through my sentences. Now I’m not saying everyone’s experience with Ritalin will be like this but it’s more likely to be if you have bipolar or a family history of it.

The most important part I want to touch on is the depression that follows mania. There are the usual symptoms of depression; they sort of bleed through while still manic. You can start to doubt yourself after having so much confidence about yourself, or something in the environment can trigger you; someone giving you negative feedback or hearing some sad news, or simply being unable to sweep your disappointed about something under the rug. I usually choose to ignore the trigger but once it happens depression is going to rear its ugly head and may stick around for some days, or for the most common types of bipolar, many weeks and months. For me, the positive kind of mania begins to disappear and is replaced with this monstrous angry monster, sometimes known as dark mania or agitated depression. I would get in some very ferocious fights with friends that when my mood returned to normal I would decide it was best if I got those people out of my life to save myself from them. I did this once a month and almost decided to end it with my best friend, but she wasn’t having it, so I had to learn to really empathise with her a bit more and things have been fine ever since. Once the mania is over you are left with exhaustion. Both cognitive and motor functions slow down. You barely get to complete a thought, your memory worsens, and it’s a lot harder to get a coherent sentence out of your mouth. You can barely get out of bed or make your own meals. You’re either full of intense and painful melancholy or extreme anger.

You don’t want to be around people. They anger you for just being there, particularly if they’re in a cheerful mood. You begin to feel guilty for the way you acted during the manic episode, especially the money you spent. There’s a lot of memory loss about what you got up to. Sometimes you want that memory so you can remember how happy you were because happiness seems the hardest emotion to achieve right now. You’re full of self-doubt, hate and may become cynical. Eventually, the lingering thoughts turn to how difficult everything is suddenly for you and it’s just too hard to go on. Then the suicidal thoughts start. For me and my highly vivid imagination they always end up being graphic scenes involving the moments before the attempt and the reaction of people after it. Blame my imagination and lifelong obsession with film and desire to be a screenwriter, but I can always turn these thoughts and images around to lead to a positive conclusion and the whole depressive episode ends.

What I’m trying to illustrate here is that the depression in bipolar is different than just stand alone depression. All depression is really serious but that added exhaustion and guilt has really made an impact on my own plans for suicide. There is more hope for those of us who cycle from one mood into the other: the depression will end, but when?

Robin Williams’s death is a real tragedy and for a few of us with bipolar disorder who have more of a handle on our depression we’re now unsure of our own future. Not only was Robin Williams more successful than us (some of us don’t even have jobs or have any hope to get into another romantic relationship) but he was older than us and I was led to believe the more experience you have with depression the more you have a handle on those thoughts, but that’s not always the case. Maybe it was simple matter of having depression x3 including a chronic illness that just made him give up, but we’re all just so shaken by it.

Whatever the reason he is gone now and that hurts a whole lot of people. From the 90s kids who enjoyed his family movies, to the older generation who loved his stand-up, even got so influenced by it it shows up in their own comedy routine (Jimmy Fallon), to those who enjoyed his later more mature films.

But he’ll always be my Captain.