Reaching in, reaching out

This sort of thing is very hard to write. It might surprise you that I’m not naturally an open person, not in a public context, and that often pushing publish causes me deep flutters of anxiety. But this is important to me. So, here goes. 

I’ve always struggled with my mental health. I was an isolated child who suffered from hypersensitivity and later developed depression, anxiety, obsessive compulsive disorder, and post traumatic stress disorder. These are things I live with every single moment. And most of the time, I don’t talk about how deeply they affect me.

Why not? I guess I’m scared of what people will think. Stigma around mental health is alive and well. There’s a lot of good work in this space, encouraging people to open up, receive help, be heard. I open up with close friends and family, I am lucky enough to be getting professional support, and I get heard.

But a lot of the time I don’t feel like I get understood. 

I don’t think that is the fault of the people around me. Our reality, as separate physical beings, is that we lead separate physical lives. My friend the author Stephanie de Montalk, in her incredible book How Does It Hurt? concluded after four years of study and many more of personal experience, that pain cannot ever be truly understood except by the sufferer. That’s a sad and difficult thing to accept.

A few days ago, Anna Spargo-Ryan wrote about why she stopped writing about her mental health. She had, she says, erroneously assumed the topic was burned out. Boring. No one wanted to hear about it anymore. I disagreed, and I related.

I feel this way. I have experienced particular frustration when I find myself circling back to the same topics over and over again – not because they are boring, but because nothing has changed. The systemic problems at WINZ, my difficulties as a beneficiary, my life as a sick person. What can I say that has not already been said? There is a huge archive of work on this website. I ask myself why I keep going.

It cannot be overstated how much my situation is complicated and amplified by my physical health. Even if I had had perfect mental health before getting physically sick, I probably still would have ended up here. Let me describe to you why.

Every day, I wake up in pain. It’s usually around the 7/10 mark, and as someone who’s been dealing with constant pain for six years, you can imagine my scale is pretty conservative. So when I say seven, I really mean seven.

The pain is in the back of my ribs, and it will not abate until I get up. So it doesn’t matter what time it is, that means more rest is out of the question. Ironically, if I was having in a deep sleep, the pain that wakes me will actually be worse, because one of the characteristics of Ankylosing Spondyitis is you need to keep moving, otherwise everything seizes. The drugs that therefore help me sleep also cause me pain.

Once I do get up, the agony will settle back down to a 4 or 5, at least for the first couple of hours of the day. That’s when I can get the most done. At the moment, my pain and energy levels are so poor that I’m unable to do anything more by lunchtime, so if I have any work to do or errands to run, I need to try to scrape it in while I can – and then not beat myself up when I have to stop and rest.

One of the reasons my pain and energy is so poor at the moment is that I have had to stop any immune therapy I was receiving. Therefore, my rampant immune system is having a field day, happily attacking all the otherwise healthy bits of my body. I’ve written before about the drug prednisone, which is an incredible steroid medication that is used a lot to treat illnesses like mine. Like most people who’ve experienced prendisone, I simultaneously love and hate it. When I am taking it, I am capable of something close to a normal life. It keeps the pain in check, it gives me enough energy that I can actually climb hills (as you may have seen a few weeks ago), and it boosts my mood a lot. Unfortunately, it also has a bunch of awful side effects, and is always meant as a short term solution. You cannot stop taking it easily, so for the past four months I have been slowly withdrawing from it. And calling the withdrawal process a “nightmare” would be an understatement.

For every gram I manage to reduce the drug (I’m allowed to drop a gram per week at the most, otherwise my soft tissues will flare with inflammation, and my mood would be indescribable), my pain increases, my energy trickles away, and I watch my life get further and further out of reach.

My flatmate, bless her, has been very supportive through my massive mood swings. Yesterday, we were standing in the Countdown checkout line and I said to her “You know how it’s like when you just want to cry and –

** interjection – I did actually cry here because WordPress logged me out and I lost several hundred words. **

Ok so basically I was saying I want to cry a lot. I also want to scream a lot, I am intensely irritable, relentlessly negative and caustic, and I hate the most ridiculous things. So basically, this is similar to my experience of PMS – literally PMS on steroids.

Trying to manage my mood has been one of the hardest things about being sick, and the current situation. This is partially because the things I used to do to give myself a break or help my sense of self-worth are largely inaccessible. I can’t go for a drive, go for a walk out in nature, go for a drink and dancing with my friends, write anything longer form, do cardio, eat junk food. Even yoga has become largely too painful. Often, all I am capable of doing is sitting with my thoughts. And they are not good thoughts.

I pride myself on my attempts to stay positive. I always have hope that tomorrow is going to be a better day. I never lose sight of a future where I make a full recovery.

But staying positive, having hope? That’s it’s own kind of exhausting.

So is trying to pretend that I’m ok, in order to not make others uncomfortable. I know my life is difficult for the people around me to witness, for whatever reason. I lie a lot when people ask how I’m doing. I don’t want to be that girl who brings everyone down, who complains all the time, who never says anything good.

But this is my reality. Today, this post is probably all I will manage, even though I really need to go to the supermarket and I have a bunch of other writing projects I would desperately love to be working on. I get this briefest period of time when I’m not in as much pain, when I’m not completely shattered. And I have to radically prioritise what I actually want to do with it.

I’m going to admit something here, something that makes me feel very ashamed, and that may make you uncomfortable.

If you’re able bodied and healthy, I am jealous of you.

As my health has deteriorated, my jealousy has become stronger. It is not something I am proud of and obviously if there was an easy way of letting it go, I would. But that’s very hard, because I don’t feel like I want much from life, not in comparison to all the things I used to think I was going to have, like a fulltime job and a house and children.

All I want is a little less pain. All I want is to be able to do some work, enough to give me a sense of achievement, enough to make it so I don’t have to live hand to mouth every week, enough that I could progress some of my passions. I want to be able to wake up and feel like I have actually slept, rather than dragging my aching body out of bed, feeling like I’ve been run over by a cement mixer. I want to not have my hours dictated by this drug or that symptom or that side effect. I want to know that my future isn’t completely diminished, that my dreams aren’t completely out of reach.

And so it’s hard not to be jealous of people who don’t have to worry about any of those things. As I said, I’m not proud of my envy. But ignoring it won’t make it go away, and voicing it may help others who feel the same.

This morning I got an email from someone who has just signed up to be a Patron. When people pledge $5 or more towards my work, I write them a poem. (Which, honestly, I do value my poems, but it seems like such a paltry expression of gratitude towards the people who support me. Patreon is one of the few reasons I can afford to live). Anyway, I emailed this person to ask if they had a topic or a theme they might like me to write a poem about.

Their answer made my cry. (Again, not hard to do right now, but still). Here is one piece:

“I teach at a tertiary institution, focusing on the Creative Arts and Industries, and I’m all too aware of the kinds of education our young men (in particular) need in order to help them develop into compassionate, thoughtful and empathetic humans. I received a very poor education in gender and sexual being-in-the-world (if that’s how I might refer to it) from my own parents and society more broadly (I’m a child of the ’70s), and I’ve already used some of your columns as discussion points in classes where we’ve talked about ethics, consent, representation, ableism and chronic illness, mental health, feminism and feminist histories and theories, to ensure that our emerging creative artists of all genders and sexualities are better informed and better able to support and help themselves and others – this is why it’s so important (to me at least) that you keep writing.”

I think you might be able to understand why this moved me to tears. At times like this when I feel hopeless, bleak and unheard, it is with extreme relief and wonder that I receive such a message. To know that what I’m doing, the physical hurt I make worse by forcing myself to write – to be told that this is of use to someone is immeasurably valuable to me.

Beyond that – beyond my need to be involved in politics and raise issues and discuss difficult topics – I continue to attempt to do the undoable, according to Steph de Montalk, which is try to communicate what it’s like to live my life. And I don’t do that solely out of hoping it will help others. I’m not that good of a person. I’m selfish. I would like more support, more understanding, more accommodations. If you’re not sure how to go about that, ask me.

Ask anyone who lives with illness. It is the most incredibly isolating thing I have ever experienced, and reaching out of the darkness is literally like floundering around underwater without a torch. You have no idea which way is up and which way might hurt. But you have to try.

So, this is me trying. And if you got this far, thank you. You’ve already helped me more than I can say.

Here are some quick ideas of things you can do that will also help:

  • Continue to read what I write, and let me know that you have. Acknowledge the effort that goes into this. Show me you’re listening, even if you feel like that’s all you can do.
  • When I talk about a certain drug – google it. For example, google prednisone withdrawal so you can find out more about why it is so hard to come off, and why I’m feeling like I am. This takes the stress off me of having to try and explain and re-explain what I’m going through.
  • When I talk about a certain WINZ process – again, google it. Better yet, see what I’ve written about it in the past so you can understand why it’s so hard.
  • If you live in my town, please offer to visit me at home. Or if you would like me to attend an event or go out somewhere with you, please make that as easy as possible for me by offering things like transport, checking what time of day I’m in the least pain, seeing if my dietary restrictions can be catered for.
  • If you don’t live in my town, please offer to skype or phone me. As I said, being ill is intensely isolating. I am forced, due to the pain and fatigue, to spend a lot of my time at home alone and I hate it. I’m a very sociable person. I want to talk. I’m not asking you to be my psychotherapist, I’m asking you to call and tell me what awesome thing your kid did or what a terrible date you had or what clothes you just bought. I honestly don’t care, I just don’t want to be completely left out of society.
  • Just try to remember that my life has drastically changed. While I might seem fine a lot of the time, I am constantly battling the twin terrors of pain and fatigue, and then my mental health just doubles down all over the top of that.
  • Give me a little leeway. I try really hard to be a good friend. I’m sorry if sometimes, I don’t manage that. I do my best. It’s something I value above almost anything else.
  • I hope, in future when I am more well, I will be able to do all of the things everyone else needs too.


7 Replies to “Reaching in, reaching out”

  1. Rochelle

    As someone who has RA and has had major WINZ issues I really appreciate your efforts to raise awareness and offer help more than I can ever say.Thank you.
    Do try for SLP again and if they turn you down, appeal and then if the tame doctor denies you appeal that too.Good luck and I hope you feel better than soon.

  2. Barns

    I really enjoyed hanging out with you the two times I had the chance. I remember being impressed that someone so ill, for whom it was clearly a major effort to be expending energy on socialising, could be such engaging and energising company — a good listener, thoughtful and willing to share. I walked away feeling glad to have spent a little time with you.

    My hope is that this little comment will inspire some good person in your town who is dithering about visiting you to get in touch and make a date. Go for it, person!

  3. Fran

    Thank you so much for sharing and thank you so much for your honesty. I really love your writing simply for its quality, you could write about different types of carrot and I would read it! But you don’t write about carrots, you write about really important things, things that matter. I *think* reading your writing is helping me to be a better (or less oblivious) person and I really hope a better friend.

  4. Anthea Whittle

    Keep writing about it doll, your writing about your experience of depression in the context of chronic illness is how I came to relate to you and so how we became friends!
    I isolate myself in my depression, but I always appreciate and can reciprocate written messages. Good on you for articulating your needs.


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