I’m a small child, seven or eight, and I’m being told that I’m sick, and with this, how I can get better. Because I don’t understand chronic illness, I tell people that I have a disease, like the ‘flu, although we’re not sure which medicine cures it. I take supplements, corticosteroids, 5-ASA, anti-inflammatories, immunomodulators and biologics. I see other people get sick and get better, so I imagine I just have to wait a little bit longer and work a little bit harder. 

It’s not until I’m an adult that I see this illness for what it is: ongoing. So, I stop expecting to get better and instead hope not to get worse. I don’t hope to recover but hope to survive. I stop prioritising the cure, and I start prioritising care. 

What does care like this look like? I’ve learned that the kind of care that sustains us sick people long-term isn’t a noun or a feeling but an action. I view this kind of care as the ongoing process of self-preservation and survival, reliant on compassion, nourishment, and rest.

I want to make the distinction here between care and self-care as it’s defined in the current lexicon. Where self-care began as the radical notion of self-love, it has since been reappropriated to function as a marketing tool, advertising individualistic acts of respite from the pressures of late capitalism. Self-care has been branded as the breaks we need to take so that we avoid the long-anticipated burn-out from working tireless hours at minimum wage. This isn’t the care I speak to. 

Instead, I speak to what Audre Lorde has called ‘self-preservation … an act of political warfare.’ Yashna Padamsee, who works for the National Domestic Workers Alliance, views this kind of care as ‘shoring up and resourcing ourselves to bring a stronger self to the movement.’

As sick people, one of the most radical processes we undertake is caring for ourselves in a world that debates our right to live. When we care for ourselves, we’re checking in and doing what needs to be done to keep surviving. We’re asking, how was that experience for me? What kinds of things did that bring up? What do I need now to be able to do this again tomorrow? Can I ask for help? Who can I ask for help? We’re experts in planning and strategizing our next move when a slip means a fall.  

But sometimes how we care for ourselves isn’t palatable. How we care for ourselves can mean taking space from our treatment, or it can mean taking space from our sickness altogether. Living in sick bodies can be relentless, and sometimes in order to rest, to recuperate, we need to leave the sickness at home. This can involve drugs, it can involve sex, it can mean binge eating foods that we know will make us sicker tomorrow. It can be re-connecting with the parts of our bodies that are pleasurable and ignoring the parts that are in pain. This isn’t neglect, or self-destruction, or self-sabotage, but care. This is how we preserve our strength. This is how we survive. 

But care of this kind isn’t upheld in the medical-industrial complex. It isn’t taught, and it isn’t appreciated. We feel this when we engage with their services. We know that we’re seen as burdensome, and we know that people don’t appreciate when we aren’t making up for this failure through a tireless commitment to being the good, silent, subservient cripple.  ‘Good Cripples don’t want to rock the boat … are quiet, and patient … stoic… never complain,’ writes s.e. smith. We’re denied the right to be complicated. We’re denied the right to complex needs. We have one need, which is getting better, and we must be dedicated to this full-time. 

So, when we prioritise the full, loving, radical care that we need over the treatment we’ve been prescribed, we’re not just burdens but ingrates. Because how dare we? Who gave us the right?

When I was twenty, one of the residents at the hospital threatened to discontinue subsidised treatment because I’d rescheduled two appointments in a row. I was alone in Melbourne with no support network, and I wasn’t feeling capable of sitting in a hospital waiting room for up to three hours. He felt that I wasn’t committed to the process, despite having been sick since before he received his doctorate. I was told I needed to prove that I was grateful for the services being provided. The file from when I was in paediatric care had followed me into adulthood, branding me as ‘difficult’. The immunosuppressant I take has a relapse rate of up to 61% following discontinuation, but he knows this. We’re in a life-long violent relationship with the state where we’re punished for our care and must beg for theirs.  

So, with this, beside this, beneath this, above this, we’ve built the scaffolding for protecting ourselves and protecting each other. We start planning for what feels like the inevitable: when our state-driven care is withdrawn and all we have is each other and ourselves. I have countless humbling memories of other sick or disabled people picking me up from hospital appointments, dropping me home-cooked meals, offering me a seat at the club, gifting me their hoarded pain killers, or lending me a make-shift heat pack. We practice what Leah Lakshmi Piepzna-Samarasinha describes as care work, how we as sick people care for our sick loved ones while caring for our sick selves, ‘from the bed and from the access van line-up.’ 

We make small movements toward a future where care is expected and provided, not earned. We continue the taboo, anti-capitalist tradition of caring for other people and build networks around our isolation. We uphold each other’s art, music, poems and passions. We applaud one another’s efforts and achievements. We hold space for each other’s pain. We show up. In the words of Johanna Hedva, we prioritise ‘the care and love of our sick, pained, expensive, sensitive, fantastic bodies.’

So, in the end when capitalism, the state and the medical industrial complex burns and expects us to burn with it, we’ll pull out the buckets of water we’ve hidden in our wheelchairs, neck braces, hospital beds, compression socks, pill organisers and rollators, and we’ll put out each other’s flames. 

Image: Rachel Groves