My best mate’s pain changed my mind about cannabis
"EVERY day of my life I have to juggle my life around my health.
"Not knowing if one day I'm going to be dealing with fibromyalgia pain, or searing abdominal pain from endometriosis.
"Every few weeks I suffer intense hormonal fluctuations that can make me go from feeling fine one minute, to literally suicidal the next. More days than not, I struggle to get out of bed,no matter how many hours I've slept. I worry sometimes if I'm going to become a statistic but am doing all I can not to be."
These are the words of my friend Kate, and if you've ever experienced anxiety or depression, it's highly likely you also know how debilitating mental pain can be. Now imagine adding in a severe and agonising chronic pain disorder that inhibits your ability to work, spend time with friends, or even make yourself a meal - all while knowing that one thing that could give you quality of life remains bound up in red-tape.
This is the reality for many Australians, including my friend Kate, who still cannot gain access to the government's medicinal cannabis scheme - despite suffering from a range of severe and incurable chronic illnesses.
For over 15 years I have watched her struggle daily with endometriosis, fibromyalgia, polycystic ovarian syndrome (PCOS) and premenstrual dysphoric disorder (PMDD) (I guess you could say she hit the jackpot in terms of agonisingly painful, incurable, debilitating illnesses), and I constantly ask myself: when will our Governments finally provide easy and legal access to one thing that could dramatically improve the lives of the estimated 20 per cent of Australians who suffer from chronic pain?
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I'll be the first to admit that in the past, I was not a supporter of cannabis use. But when I saw the difference it made to Kate's life, I knew it was something we had to stop demonising.
A few years ago, Kate began experiencing nausea so severe that she could no longer eat.
Sometimes, even just drinking water would be enough to trigger a vomiting or dry-retching spell. She survived on mashed up foods and health shakes, often lugging a plastic bucket from the couch to the bathroom. We would talk online, as she lay on the floor of her house in Canada, where she was living and working with her partner at the time, sobbing because all she wanted to do was eat a plain rice cracker; to eat anything.
Doctors were baffled, giving up on her before they'd even tried to investigate, brushing off her symptoms as an eating disorder. I felt so helpless. Would I see my friend again? Was she going to die?
It was during this time, desperate for something that would work, that Kate began vaping medical marijuana, which she was legally prescribed by her doctor (Canada legalised cannabis for medical use in 2001) - and the effects were incredible. Suddenly she could keep small amounts of food down. Suddenly she could get off the couch and get a few things done around the house. She had some quality of life, no matter how small it was.
However, when she returned to Australia, Kate no longer had the option of getting a legal prescription of medicinal cannabis. Instantly, she began regressing. The plane ride home was hell in itself; she threw up over 10 times during the flight. Back home in Australia, she now has to rely on pharmaceutical alternatives that leave her at the mercy of various negative side effects.
Kate says that while drugs such as valium can help calm her down while experiencing a PMDD "episode" - during which time she will be "rocking, physically shaking, stuttering, and suffering from suicidal ideation and utter exhaustion" - the downside is that the drug leaves her even more exhausted, and makes it difficult for her to stay awake. She also worries about the side effects from some of the drugs.
"During one of my recent PMDD episodes I took a valium and slept until 1pm. Not exactly helpful," she says.
"Right now I take amitriptyline (an antidepressant), but I fear being on it long term as there are suggestions it could increase the risk of dementia and heart [problems].
"I just want some hope, to be able to live a happy life; to be a happy mum and partner, you know? I just always worry that I'll end up a statistic."
I first wrote about Kate in 2015. At the time, medicinal cannabis advocate Lucy Haslam (who lost her son Dan to terminal cancer in 2015 and went on to found the organisation United in Compassion) was making headway with government support for the use of cannabis by terminally ill Australians.
When I spoke with Haslam in 2015, she explained that her hope was to "get to the situation where people don't have to rely on the black market anymore". I remember my friend Kate optimistically hoping that legalisation would also trickle down to those with incurable pain disorders, like herself.
Fast forward three years, and the system remains so flawed that even terminally ill patients struggle to easily access the government's medical cannabis scheme. It begs the question, if government is moving so slowly that those who are dying are still relying on the black market, what hope do Australians such as Kate have?
While my friend is lucky to have a supportive doctor who could try to have her accepted for medicinal cannabis, she says that the cost is simply too high - especially for those like herself who cannot work consistent, full time hours.
"I am already spending hundreds of dollars a month on my current treatments … I constantly feel guilty about how much I have to spend [to function]. I haven't gone clothes shopping for myself in at least a year because I feel too much is spent on my health."
"I have a friend who works in elderly and disability care whose clients are still using it black market, because they prefer it to the other drugs on offer," Kate says. "One of her clients with epilepsy was going to be faced with spending $100 a day for the amount needed to treat her.
"The government keep putting on this big front about how they are making it accessible for the sick, whilst in reality it's not like that at all."
Haslam agrees, saying the government's scheme has been "set up to fail", and likens it to "a slow train wreck".
"Kate's scenario is very, very common," says Haslam. "There's so much focus on mental
health in Australia, yet these policies are causing immense mental health issues for those
who are already significantly burdened."
"There's definitely a compassion deficit in Australian politics. I think the Australian population would be very angry if they found out how bad things are for patients."
As an example of the many forms of unfairness being dealt out to those who are already suffering, Haslam shared with me the story of an Afghanistan veteran who had been facing jail for using cannabis to treat his post traumatic stress disorder. After assisting him with his application, which took around 18 months, the veteran finally had a legal prescription - however, his excitement was dampened when he discovered that there was not a single pharmacy in his area who would dispense medicinal cannabis.
"In the end, he had to drive an eight hour trip with his young family to get the prescription, and on top of that, had to check in every week with his doctor to make sure he wasn't 'abusing' it," says Haslam.
"Then he had to do an application every time he needed a new prescription. The whole process has made his mental health so much worse. Eventually I got legal support for him and he's now working with a lawyer."
Haslam says she and her organisation will not give up on fighting for the human rights of those in pain, and is preparing to fight for those who access the black market due to an inability to access the system legally to be exempt from prosecution.
"I've always tried to be respectful, but now we're ramping things up; the gloves are coming off," she says.
For Australians in pain, cannabis is not a party drug; it is a natural remedy that allows them some sort of quality of life - and isn't that a human right? Yes, cannabis should be regulated, grown at the highest quality by professionals, and prescribed responsibly. But every day that passes, is another day too late for those who need relief right now.
I'm not the only Australian with a loved one suffering unnecessary, agonising pain right now. I'm not the only one who wonders how much longer their friend, family member, or partner can keep pushing on.
And the government should know that we, as Australians, deserve better.
Jas Rawlinson is a freelance journalist, and author of book Reasons To Live One More Day, Every Day.
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