I’d say I’ve been politically active since I started University in 2008. I first became ill with ME/Chronic Fatigue Syndrome in 2006, followed by fibromyalgia and depression in 2011. For the most part they’re pretty separate aspects of my life, with much of my activism being related to students, women or LGBTQ people. However, I think my chronic illness has subtly provided with information, skills and tools useful in my activism. So whether you have a chronic illness or not, hopefully his post will highlight some of the things us chronic illness people are bizarrely expert in which can directly support political engagement.
I currently volunteer on reception for a few hours a week at my local Women’s Centre. It’s currently my only regular time commitment and I somewhat have to plan my week around it to ensure I have the energy to go. The women that come into the Women’s Centre could be there, needing help, for a huge range of situations. I’ve dealt with women seeking advice about
domestic violence, job-hunting, probation, booking a reiki session, wanting to volunteer, functional English classes and SO much more. The Women’s Centre’s work is extremely varied, and for a couple of hours a week I’m in a bubble that takes me out of my own problems and challenges me to best serve the women in front of me. I come from an extremely privileged background, and hearing some of these women’s stories really just puts my life in perspective. Despite being too ill to work and receiving ESA, I have a roof over my head, food in the fridge, a loving girlfriend, few responsibilities, and never nee to truly worry about money (thanks to my parents). Volunteering somewhere that actively find me useful, despite my limitations, has done wonders for my self-confidence, but I think my greatest gift is the jolt of perspective and gratitude I receive every week.
2. Self Care/Pacing/Spoons
You may or may not be familiar with Spoon Theory
, but it’s a pretty big ‘thing’ in the chronic illness world. Too much political engagement or activism is notoriously likely to leave people with a severe case of burn-out, sometimes resulting in mental health problems (such as depression) which can be difficult to shift. I’ve been there, as a direct result of activism. The more I pushed through and various activist campaigns became my entire world, the more I lost all sight of the bigger picture.
Spiralling depression and chronic pain eventually led me to realise that I was going to have to take a step back from all my (predominantly student) activism and engage on my own terms, with strong boundaries in place. I had to go back to basics for self-care and learn how to prioritise my mental health. The chronic illness world is full of talk about pacing, spoons, and self care. Regardless of whether you have a chronic illness or not, these techniques and this way of thinking is invaluable to activists. I’ve got a range of ways that I cope with overwhelm
, and I’m learning not to feel guilty for prioritising myself. Activism stands to learn a lot. Everyone has mental health (regardless of what state it’s in) and it must be considered when engaging with politics.
I didn’t come to activism through my chronic illness, I barely engage with disability activism if I’m honest. Not only do I have chronic illness, I’m also a queer woman. It was that part of my identity that initially had me reading zines and running to be Women’s Officer in my Students’ Union. Chronic illness is another aspect of my lived intersectionality. I can’t get away from any part of my identity and they all interact in a way entirely unique to me. I’m painfully aware that the vast majority of those diagnosed with ME/CFS and fibromyalgia are women. There’s numerous theories as to why this is, but I definitely feel as though when I say “I’m exhausted”, a common response, because I’m a woman, is “oh, well lots of women are super tired all the time”, whereas that stereotype isn’t really there for men. I find queer/feminist communities to be progressive in terms of accessibility and disability, and it was through these communities that I initially became comfortable referring to myself as disabled. Being chronically ill informs my activism, through its interrelationship with my gender and sexuality, in a way that it obviously wouldn’t if I weren’t ill.
4. Personal experience
This leads me on to being weirdly grateful for being ill, in that I’ve personally experienced things which further support and motivate my political engagement. I’ve been through the benefits application process (yes, it is as awful as everyone says), I know what the dark depths of depression feel like, I graduated late because I was too ill to complete my dissertation on time, I’ve tried out tons of apps that are supposed to be good for energy management and symptom logging, etc etc. Some of these experiences make me angry and want to fight for change. Some of these experiences enable me to better empathise with others. Some of these experiences allow me to think about accessibility for an event or campaign in a different way. My personal experiences make me who I am today, and many of my chronic illness related ones have definitely led me down the activist path.
5. Navigating the system
Chronic illness has taught me how to navigate the system, be it a democratic structure, government agency, business or something else. Applying for benefits was the most horrible and gruelling experience of my life, and I couldn’t have done it without the support of my mum. But, what I did find was that there’s a wealth of information out there from people who’ve been through the process too and can offer tips and advice. This sort of advice is probably there for virtually any sort of system or process you want to navigate. And if it’s not, you can help out someone else in the future and share your experiences. I generally live by the philosophy that there’s always someone you can complain to or there’s always something proactive you can do in a bad situation, it’s just a case of finding out what that next step is and taking it. To me, that’s pretty much activism: seeing a problem, and taking steps to improve the situation. My experiences of the (horrendous) systems relating to chronic illness have definitely prepared me for the (usually easier) systems related to much of my activism. Students’ Union Council seems a doddle compared to taking on the DWP!
Lizzy Goddard is the founder of The Pillow Fort, a glorious chronic illness-positivity-thriving-youngish people hybrid-fusion-mix thing. After realising that wallowing in chronic illness communities just made her feel worse, she’s now on a mission to make chronic illness suck less through fun and positivity. The Pillow Fort consists of a digital magazine, a community, blog, a shop selling physical products and more.