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

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Stigma? What Stigma?

Hey peeps! Look who’s back writing another blog post. I told you I would. So, I’ve been following the ABC’s coverage of mental health awareness on TV and on social media and I’ve been impressed with the many forms of awareness they are using. After all, we all experience it differently. They’ve taken a ‘mental illness is an everybody thing’ approach to it, which I do understand – we all like to relate to each other – but for some of us mental illness can be genetic and our type of mental illness does not affect everyone. Some of us – ok me – believe that this type of mental illness is non-recoverable and it’s there for life and we’ve just got to deal with it the best we can. Of course, recovering from any mental illness is a difficult road to go down. I’ve had various forms and severities of social anxiety for most of my life. It took my voice away in childhood. And I still have some non-inherited forms of mental illness to overcome like PTSD and generalized anxiety disorder.

So, what is this inherited form of mental illness, I hear you say? Well, it’s a mood disorder, most likely bipolar 2. It triggered in my early 20s after I took any type of prescription med. I’m not here to criticize the Pharmaceutical industry. The medication worked for what it was designed for, it’s just that it did something else, which doesn’t happen to all people, just people with a family history of mood disorders. So kids: always look at your family medical history before taking drugs, especially the ones your teacher says you should be on.

Bipolar is my newest constant companion, together with autism and ADHD I really don’t know what each day will be like. I can wake up one morning and have little energy and at some part of the day or night be unable to contain my energy. I randomly go on spending sprees, say things to people I forget and commit to things without giving it much thought. Then at some point in an extreme exhausted state I may crash into a deep dark depression. Even writing about it changes my mood state so I’ve got to be careful.

First, negative thoughts seep in after days of over confidence. I go from thinking everything is possible and everyone loves me to doubts about my abilities to questioning who my friends really are. Then comes the pessimism and a cynical view of the world and the cruelest sarcasm towards people you could ever think I was capable of. And then I just keep sliding down, down, down. To the point I become incapable of making myself meals or can even get out of bed. My mind turns on a loop of very vivid thoughts of suicide; the moment before, the act and me gazing down at the world following my suicide. Then after a couple of hours I cycle out of it. I become hypomanic again. It’s an all-round positive mood, energetic and ready to give the world a big giant bear hug.

I know a few people who have actually had their friends commit suicide and it made me feel very uncomfortable and guilty to be around them and hear them going through that mourning process. I never used to empathise with people when thinking suicidal thoughts and people’s poor choice of words to comfort or encourage a deeply depressed person to rethink their decision didn’t help either. I couldn’t see things from the point of view of a suicide survivor and copped a lot of abuse for that. But I’m used to it. My old blog was trolled so much I had to delete it but I’m back and expecting it now so whatevs.

Then, when I became deeply depressed again, despite being on anti-depressants, I started to think about one friend in particular who had lost a friend who I didn’t want to upset again if I did kill myself. And I certainly didn’t want my friends and family to develop a mental illness because of the shock of my own suicide. Before I didn’t think they’d be a shock because I talked about it so much – I even think I wrote a status update that was an equivalent to a suicide note. Luckily, a few friends got behind me and started to encourage me and I felt better.

Now when deeply depressed, if I can’t avoid falling into it through constant gigging, playing video games, watching comedy and sci-fi, I will just experience it and focus more on the physical pain than emotional. Once I get control over my mind I can push my emotions in any direction. So, I will deny my depressed thoughts and just try to focus on the next mood cycle. I wouldn’t do this if I had unipolar depression but because I’m also a rapid cycler telling myself the feelings are just temporary works for me. So far.

I think in order for people to really grasp what bipolar is about I need to talk about my manic symptoms. First, I’ll explain the differences between hypomania and mania. Hypomania is the milder state but it’s a higher than usual ‘happy’ state to be in. You’re very motivated to do things, you might get a few creative ideas you’d like to try out and you want to be around people more. Together with the motivation and creative ideas you’ve got the energy to get everything done and you don’t even require that much rest or sleep.

Mania is the more serious state. I can only tell I’m manic by the wired-like stimulated state of my brain. I have non-stop racing thoughts, overflowing with 10 to 200 creative ideas I must accomplish NOW! I’m restless and anxious and my skin tingles in discomfort. Sounds are louder, lights are brighter- every sense is turned up way loud. This is the state you become delusional and psychotic in. You have higher ideas. You feel like you are enlightened and that everyone else is intellectually inferior to you. They can’t see what you can see. They’re stuck in this stiff collared world of facts and reason, and not into the Jungian dream-like utopia that you slipped in through the smallest crack in the universe. You have more energy than you’ve ever dreamed of and your legs don’t stop moving for days. You’ll pay for it later. You know depression will come but you tell yourself you’ll be like this forever, although, to be honest, you just want to go back to hypomania.

It’s not always so positive though. Mania and hypomania have an opposite evil twin. It’s sometimes called dysphoria or dark mania – it’s the ugly pessimistic and paranoid face of bipolar. Much of it is mixed with symptoms of anxiety and depression, though I’m still unsure if this is what constitutes a ‘mixed episode.’ You snap and yell and rant at people. At worst you have paranoid delusions about them. You’re impatient, anxious, losing confidence in yourself but still have a flair of arrogance about you. You still have all the energy of mania but all positivity is gone. This is actually the most dangerous state to be in because if feeling suicidal you’re impulsive enough to do it. You’re definitely ‘not in your own mind.’ People can become violent when like this.

Above I said mania was like a drug and indeed it is but no one goes on a constant high for days or months without making some mistakes. Those can be overspending, sharing your delusional ‘enlightened’ ideas with people, just ranting and raving and ending up in places you can’t remember how you got to. There’s a trail of destruction you’ve either got to clear up or run away from. You interact with a lot of people during this time, people who you may have to see again when you return to normal, unless you’re rapid cycling – if that’s the case then you’re probably going to repeat the same mistakes again.

In my first year of taking Ritalin for ADHD every dose made me manic, from at least day two of taking the drug. So I spent a whole year basically manic. Depression never came because I’d just take another dose. Eventually it did hit at the end of the year where I was also experiencing clusters of seizures. I was just waiting to die basically. I’d come up with some wild themes for my science fiction stories and books on Jung or Synchronicity took my mind into a new and exciting realm. It was incredible but it wasn’t real. Some of my delusions were very damaging to my mental health. I became obsessed with people, people I acted like I knew well and was destined to be with. That is one place I do not want to go to again. I thought I would never recover but my medication for anxiety has helped make that world disappear. I finally feel sane again.

The title of this post is kind of confusing but what I mean by that is before I was even aware there was such a stigma around mental illness, well, I sort of always talked about it as though I was talking about a hobby. I find psychology and neuroscience to be fascinating subjects and my underdeveloped social skills could not pick up that I may have been making people feel uncomfortable. I actually had to be told by someone that people might not want to be around me if I kept talking about it. Then after I was trolled severely after writing many manic fueled blog posts before I even realised that I could even be bipolar, I decided maybe I’ll just cut back on posting about mental illness and ADHD and autism. But lately I’ve been thinking censoring myself and giving in to the stigma just makes the stigma of mental illness even stronger and I felt better being open and honest about all my mental health issues and atypical neurological wirings. So, while I still may be aware that I’m making people uncomfortable I can just ignore it and keep on talking, or writing. It’s not like anyone will tell me when I make them feel uncomfortable.

October is even ADHD Awareness Month and because I’ve been unable to write my blog about inattentive ADHD, I’ve just been posting a few things on social media. I will eventually write that post though.

I also find educating myself about my illnesses, neurological disorders and other ailments makes me develop the best coping skills for dealing with them. I’m untreated bipolar only on anti-depressants for my severe anxiety, so the only treatment I can do is problem solving skills. Okay so I may have spent $300 or more in the last week and I’ve been mouthing off/ranting a lot and my upcoming gig list keeps growing because I’ve finally got the opportunity to photograph what bands I want, even the ones I need media access to, and not just photographing bands keeps me sane, but the preparation keeps me looking forward to something. Then there’s my recently reignited video game addiction which I really think helps keep my depression from triggering. I just get exhausted now which is ok. I’d rather have the tiredness and lack of motivation that comes with depression without any of the emotions.

So, this is me. A life of mental illness and unique brain structure. There’s no stigma here. It’s just my life. It’s wild, it’s messy, sometimes boring, other times exciting, scary, frustrating and then something unexpected happens.