TW: suicide, mental illness.
I’ve been battling with such a huge amount of anger and sadness over the past few weeks, it’s been impossible to know how to write about it. On April 24th, my friend Rose died. She took her own life. This past weekend, I attended her funeral.
I don’t know how to write about Rose without making an example out of her. But I feel like it’s impossible to separate the loss of her from politics. It’s impossible to talk about how much we’ve lost without getting so fucking angry about the reasons why.
Rose’s situation had many similarities to my own. She dealt with chronic pain, illness, and mental illness. Most of the time, she dealt with it with an incredible amount of grace, deep insight, and cutting, caustic humour I loved.
Going to her funeral was so fucking tough, but I am so glad I did, because I got to hear so many memories of her, so many things about her I didn’t know. We met through Tumblr a few years ago. I never got to meet her face to face, which is something I will regret forever. I always convinced myself there would be time.
The thing that all of us remember about Rose is her compassion. It didn’t matter what she was dealing with herself – or maybe it was because of that she had so much empathy. But she constantly helped others, even when she was suffering. She was a huge support to me so many times. When I first got diagnosed with AS, she sent me this huge email about all the different drugs she had trialed for pain, and her experiences with them. She didn’t give me unsolicited advice. She just supplied all the information I needed. Because of her, I knew what to inquire about when I went to the doctor. Because of her, I went down the path that ended with me on Humira.
Rose was not so lucky. She was constantly denied medical attention and help. Even though her presentation was far worse than mine, she couldn’t get a referral to a rheumatologist. She was accused of all the usual ableist, sexist bullshit. She was in and out of hospital with no support and no answers for such a long time.
I think something a lot of people, even medication professionals, don;t seem to understand, is comorbidity. Comorbidity means that once you have one illness, you’re vulnerable to and really likely to develop a bunch of others. So what people on the outside see as hypochondria isn’t, it’s real. My list of diagnoses is as long as my arm, and I’m often met with disbelief about that, like – how can you have all those things? Because they all come hand-in-hand, that’s why.
And it’s impossible not to be so fucking angry about it. We’ve lost someone who was so incredible, so multi-talented, so deeply kind and with so much to offer. I said to someone at the funeral “Was there nothing she couldn’t do?” because honestly – she wrote, she drew, she composed music, she programmed games, she danced – even with all the pain, she danced.
A few years ago, I remember that I was feeling really angry about something, and Rose told me to put an empty wine bottle in a plastic bag, walk outside, and swing it against a tree.
There’s not enough wine bottles in the world to express how I feel now.
Yesterday, I broke down in my doctor’s office. He ended up calling the Crisis Assessment Team. At the same time, he sent a referral to First Point of Contact at the hospital for some grief counselling for me.
The CAT team took my mobile number and said that they were very busy, but would call within the next two and a half hours.
I ended up waiting at the surgery for the call, because I was exhausted and it was safe and warm there.
Three hours later, they hadn’t called. The nurse followed up. It turned out that someone there had seen the referral for counselling and decided that was all that was needed? (Grief counselling through the PHO will probably take several weeks to come through). They then yelled at the nurse for not informing them I was still waiting at the surgery, because I was supposed to have gone home.
The nurse rightly said: You were supposed to call her mobile. Why does it matter where she is?
Long story short, I spoke to them – but it was way after the time I needed to. They checked that I was safe, which I was, and then said they’d triage me and talk to me tomorrow. They called this morning, and their advice was to make another appointment with my Dr, and to call ACC because I’d be better off getting grief counselling from them than the PHO. Which is useful.
I’m lucky. I am articulate, strong, and I have a lot of support from the people in my life. But if I didn’t have that, this response could have been much harder to deal with.
The other night, I called Lifeline because I really needed someone to talk to, who was completely impartial and wouldn’t be effected by my emotions. They were wonderful. I spoke to an older man who just asked me what he could do to help, and I said that I just wanted to talk, and so we did. And I calmed down completely.
These are just my experiences. Not everyone is going to get the same help or lack of from everywhere. But I just feel like it’s so important to share it, even though it scares the shit out of me to do so, because this is a huge huge fucking problem.
How high does the suicide rate in New Zealand have to get before all of this changes?
My grief has opened a new depth of anger in me that I have never before experienced.
The circumstances Rose dealt with were avoidable. I have emails from her telling me about her experiences with the health system.
When I was publicly battling WINZ two years ago, Rose told me about her experiences with them. She went back to studying so she didn’t have to deal with them anymore. She wrote to me that she was getting all As.
There are so many forms of ablism that people with both physical and mental health challenges from the institutions that are supposedly there to support us. (Disablism or ablism is a term used to describe discrimination against people based on their dis/ability).
I think the best thing I’ve read about ableism in all its forms is my friend Elle’s series on it: individual ableism, systemic ableism, benevolent ableism, and internalised ableism.
Kyle MacDonald, spokesperson for the NZ Association of Psychotherapists spokesperson, says the government is ignoring the fact that New Zealand’s levels of mental illness and suicide are amongst the highest globally.
“I believe we’ve reached the point where funding alone will not solve the problem.” (Source).
I agree. Chucking money at this will help. Fuck yes – chuck everything we have at it. Please, god. In the past month, friends in my immediate circles have all suffered preventable losses. How is this happening? We cannot let it continue.
I will not lose anyone else.
I will not.
The lack of funding for mental health services is ableism. It’s also classism and racism.
These are things that are institutional, systemic, and deeply rooted in New Zealand culture.
I’m not saying white or wealthy people don’t have health problems. Obviously they do. But often they have the means to address them, if the public system can’t or won’t. They don’t face the same barriers.
People are denied physical health services because of their mental health presentation.
People are denied mental health support because they don’t meet certain criteria. They don’t present as serious enough to warrant one of so few spaces available. They’ve used up their allocated hours or caring.
This is politicising death, and a death that is so close to me, and I’m sorry. It makes me feel like a fucking vulture. But I cannot not write this. I need to get the anger out. I hope that Rose would have wanted me to write about it, because she was angry too.
She was generous, and courageous, and so fucking special. And now she’s gone.
And as far as I’m concerned, that was preventable.
So how can I not write this.
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