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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Talkin’ Chronic Fatigue Syndrome

I’m going to take time to talk about something I should have been talking about all along, and not just to my adoring readers but family members and those people who handle my government disability payments. I’ve not talked about it because for a long time I thought I got a handle on it, even cured myself of it but now I know that’s not the case it’s still something that’s difficult to talk about because it makes me look weak.

This may come a surprise to many of my detractors (trolls) but I don’t want to look weak. It’s bad enough I almost pass out every couple of hours without eating, this is something that won’t go away every time I pop in a sweet glucose treat. I’m talking about chronic fatigue syndrome. It’s a condition where you only have small amounts of energy that gets used up fairly quickly, and once it is you are left exhausted, unable to carry on with the most basic of physical tasks.

In me personally, my mental energy becomes non-existent too. The cause seems to be from being bedridden for weeks or months on end. Think what a polio survivor had to go through. Now assholes will call this a first world problem but I tell you now if I lived in a third world country with this condition I’d surely die, and I often do imagine myself in less than desirable situations, harsher environments where I’d have to live off the land and try to cope with my many ailments, like primary dysmenorrhea – but’s neither here nor there. Men can look up what that word means.

But back on feeling weak, I hate it. I don’t want to feel pitied. I’ve been pitied enough for my autism. Feeling pity really strikes a blow to my dignity. People can’t help it. They’ve grown up in a world where people with disabilities are looked at as hopeless, something to be pitied as though that makes us feel better. Nothing could be further from the truth.

So, it gets hard to reveal those things that do disable us for fear of being accused of making excuses or wanting pity, when all we really want is some understanding and maybe not being put in situations that make our conditions worse. If you know me you know I’m quite open about my crippling anxiety and my depression that has made me feel suicidal so many times I’ve lost count. Those two things also reveal a weakness in me, a difference. Yeah sure, there’s a meme that says people who deal with these things are actually strong of having survived them, but they drain you of your mental and physical energy. They make life harder to live. You live a less average life when you live with mental illness, or autism, or ADHD, or hypoglycemia, or chronic fatigue. And I got all those things. They stack up and weigh you down. I’ve also got epilepsy but I have a handle on that, mostly.

I’ve always been able to hide my chronic fatigue, to stay on top of it, as serious as it is it was never life threatening. That was until a few months ago when I felt like I was going to collapse. I could always avoid it, because I wasn’t doing too much. I could rest when I was tired and pick up from where I left things after I got that energy back. But working just 8 hours per week and going to a gig on the weekend plus spending a full two to three days editing and uploading photos is just too much for me. Doesn’t mean I’m still not doing those things. Stress and anxiety and the stress from depression can also speed up the process of a CFS crash and I’ve always got an abundance of that.

Time for a little background history on how I became so fatigued: when I was 13 years old I caught a cold, which I thought was glandular fever – turned out it was pneumonia. I spent 4 months off school which I only remember because my teacher angrily made me aware of it. It affected my grades and I was in remedial classes before that. My usual childhood energy had dissipated. I just didn’t feel like doing things anymore. I felt like I was robbed of a normal childhood; I was just coming out of years of being a selective mute which meant I didn’t talk at all in some environments – all of those places that were not my home. I didn’t do much talking at home either. By the time I was 15 I was talking a little bit more. Might have even ordered food on my own. I had no energy to do much though. I’m introverted too and we feel the energy drained from us in social situations, add CFS to this and I may as well just have fallen asleep in front of everyone. I remember I used to rest my head on my splayed out arms on the church lunch tables back in those days.

It took me many years to realise my lack of energy wasn’t just because I was a teenager or because I ate mostly junk food. It contributed but it wasn’t the main cause. In my mid 20s I started to eat healthy and exercise and felt some of that energy coming back. I thought all my issues with a lack of energy were put behind me. But that wasn’t the case. I just wasn’t doing enough.  I was put on Ritalin when I was 24 because of my ADHD so I began to do more; learning advanced math, physics, starting to write my own novels – the usual things. I was wasted after just one day, sometimes just a few hours while the pill was still working in me. Eventually, I had to stop taking Ritalin because it was actually making me manic. I should probably mention that I still have a mood disorder of sorts because I tend to bring up my symptoms a lot. After a year without Ritalin I started to go back to normal. What is normal for me; completely unfocused, unorganized, forgetful, introverted, lethargic, apathetic, emotionally reactive, and with limited energy reserves.

To the observer my energy seemed normal as long as I paced myself. A medication damaged brain meant sensory sensitivity and a deeper sense of when something was going wrong with my body, which meant I could stop myself before I became exhausted. But then the government decided I could do some work despite being on disability. My disability was severe anxiety. I had only briefly mentioned that I had chronic fatigue, and my anxiety is manageable at work (though I have about 3 different shifts in mood – mostly depression and hypomania) and it happens to be the kind of job I can slow down in and it probably only gets noticed by other employees who don’t say anything and when they do I just glare at them. I’m the only one allowed to have a lunch break because of my hypoglycemia. But once I exhaust all my energy balanced blood sugar levels don’t really make much of a difference.

I get angry when I have to work more days because of another condition that makes me bed ridden for about two to three days. OK, it’s severe period pain and it’s getting on my nerves. I’ve started to pop muscle relaxants like they’re tic tacs.  I feel like my employer is not keeping with the deal that I’m only supposed to work 8 hours per week. I can push it to 16 hours but I can just make it. Push just one more hour out of me and you’re going to have to call an ambulance.

And that’s what makes me feel weak. I have at least 3 conditions that make me feel physically weak. I can deal with having a differently wired brain, even mental illness. But physical weakness – it’s like having energy is like the only good thing I’ve got going for me (probably why I enjoy the mania) but it doesn’t last long. It’s nothing I can simply cure with healthy eating and exercise. I’ve tried that and I continue to do that. The cause to chronic fatigue is still a mystery to me. I can only guess that the brain sees that the body is inactive for a number of weeks, months and shuts it down to save half the energy, but there’s no releasing that full amount of energy ever again.

What a person with CFS really needs is for others around them to be understanding and acknowledge that it’s really happening. They need to allow the CFS sufferer to pace themselves and only do as much as they think they can do, and when they know they’re about to exceed that then they can stop for the day. Usually when I get tired from doing something I get anxiety about getting tired about doing that thing again. I always have to reassure myself that if I pace myself better I might not get tired again. Course, I always get tired. So, it’s a simple matter of letting myself know I’m not going to be tired forever. In this impulsive and fast paced impatient world there’s not many who are willing to slow the fuck down and realise not everyone is going to be capable of doing the same things as them at the speed at which they can do it. But chronic fatigue is a very real illness, even in someone who is at times impulsive and hyperactive. It’s just as impairing as back pain. Might not be as painful but when you’ve got zero energy you can’t even go to the toilet let alone clean one room in the house or work for just 10 minutes. But with understanding and patience CFS can be less of a burden on the sufferer, as long as they’re allowed to pace themselves.

Note: I actually did a bit more reading up about CFS after writing this whole post, so I’ve learned a few more things, like it’s tied to hormonal and blood sugar issues, even sensory sensitivity. Maybe one of these days I’ll write about it in a more sciency way, but right now I’m so tired. This post is just one of three I’m writing over the next two weeks too.

Here’s a good link to read in the meantime