I wouldn’t have survived my chronic illness if it wasn’t for the support I had around me.
After developing chronic pain at the age of 19, with additional fatigue, tremors, nausea, and chronic migraines. At first I thought I was just run down, and kept going. This was a mistake, but no one ever wants to consider they might be really sick - especially not at a young age.
Eventually I went to a doctor. Then another. Then another. Blood tests, MRIs, ultrasounds, colonoscopies, endoscopies, more blood tests, then even more. It might be Multiple Sclerosis, it might be this, it might be that, might be, might be, might be. Finally: “There’s nothing wrong with you - this might all be in your head”.
It took me years to finally recognise that something serious was happening to my body. It didn’t help that some of the people I surrounded myself with in my younger, more carefree years were not particularly invested in sticking around in times of trouble. Many of them also added to my denial of my own pain. I was once told by a ‘friend’, “It’s funny that you always seem to suddenly get these tremors when you don’t want to do something” - I’d said I'd wanted to go home from a party, because my leg was spasming.
Dating was indescribably difficult. One woman I dated told me I was “too much trouble” after a particularly rough flare-up of chronic pain that left me bedridden. Another breakup – one of the biggest of my life – ended with him saying I had misled him about who I was, and that I didn’t want to go out and ‘have fun’ as much as he wanted to; I needed to rest too much and he found that boring.
Nine years later, I still don’t have a full diagnosis of what’s wrong. I’ve tried plenty of medications and therapies; the prescription and the holistic, some illegal and some completely and embarrassingly illogical. I’ve made plenty of bad decisions; trying to drink to escape how completely shit I feel, taking far too many prescription painkillers just to be able to get through the day and hold down a job, and much worse - but I’ll spare you the gory details. I made a lot of stupid mistakes instead of dealing with the problem.
Despite still not having a diagnosis and any kind of prescribed treatment, I’m in a far better place. Partly because of the treatment I’ve given myself - accepting that I’m chronically ill, and giving a shit about my own welfare - and partially because of the help I’ve received. Not from medical professionals, but from everyday people who chose to give a shit about me, rain, hail, or shine.
One of the first ways I learned to accept my chronic illness was through meeting other chronically ill people. Since I’m a millennial - that was through the internet. Joining groups about chronic illness on social media not only allowed me to vent about the day-to-day problems I was facing, but also learn about the wide variety of illness and symptoms people faced. It taught me a deeper sense of empathy I ever knew existed.
The education these groups gave me was invaluable. I learned about my symptoms and how others managed theirs, but it also showed me, a lonely queer chronically ill woman, a group of complete strangers believing in each other’s pain and going out of their way to help one another. I realised that I’d been searching not just for advice, but after so little success with doctors – I was searching for someone to simply believe that my pain existed.
Being a part of these groups for years, I eventually became real friends with some of these women. Having chronically ill friends completely changed my life. It changed the way I saw and spoke about the illness I was experienced. There was something unwaveringly powerful in truthfully being able to respond to the question, “How are you feeling?” with “Absolute crap” – and knowing that person really understood the daily experience of pain that was driving my answer.
In Homecoming Queens, the two women living with chronic illness aren’t fighting identical battles, but they are comrades in the same war. They might not wholly understand the decisions each other makes, or even the details of each other’s illness - but they believe and support one another regardless. Knowing the other has their back is invaluable in their daily fight, and will provide support when the going gets even tougher than it already is.
The people who saved me might not completely understand what was going on, but they believed me. And when you’re ill, you need people around you who give a shit and believe you – especially when that illness might last forever.
