By Kathryn Black
After five years of blood tests and failed prescriptions, I finally received a diagnosis. In a blur of medical terminology – antibodies, toxicity, hyperthyroidism – I found out that I have Graves’ Disease.
Graves’ is an illness that causes the immune system to attack the thyroid (the gland that controls brain function, digestive system, bone maintenance and heart health). My thyroid is being sabotaged by my own body and the result has been a vicious cycle of migraines, panic attacks, tremors, palpitations and hideous mood swings. There is no cure, nothing I can do about it. Each symptom has had a detrimental effect on my life, has affected everything from the mundane to the momentous.
It has ended my relationships, caused me to fight with friends and family, and often made me want to just shut myself away. But one of the most unexpected outcomes has been the surprisingly devastating way that Graves’ disease has affected my relationship with live music.
Pre-diagnosis, live music was my escape; an out-of-body experience that allowed me to forget the monotony of growing up. I started going to gigs in 2004 – a pin badge-wearing, emo-fringed teenager – and I’ve never stopped. However, for me it is no longer the intense, euphoric experience it once was, as chronic illness has turned my once safe space into somewhere far less welcoming.
Hyperthyroidism affects memory and can often stop me mid-sentence. I spend each night in a pool of sweat, and can erupt into a depressive and angry state at any time for no evident reason. It’s an invisible illness: one where the symptoms aren’t obvious to others but are difficult and inescapable to live with. I knew life post-diagnosis wouldn’t be easy but I was and still am angry that it’s taken away the place where I felt most at home.
I had first realised something was wrong in 2008, as I lay slumped against the bar of the London Astoria at an Angels and Airwaves gig, totally unable to move. I was 17 years old and sober, but most of all I was afraid. Panic attacks, overheating, and struggling to stay standing are all standard symptoms of my condition, and obstacles that continue to make it difficult to attend live shows.
Venues fail to cater to diverse needs. There’s no escape from a dark room packed with drunk people and loud noises. There are rarely seats, and a soft drink often costs more than a beer. Over-zealous security guards have been known to confiscate prescription medications; they have neither the time nor the inclination to differentiate between MDMA and Carbimazole.
That said, gigs feel like a luxury spa weekend compared to the hell of attending a festival with a chronic illness. The realisation that perhaps my body couldn’t take any more nights sleeping face down on paper-thin roll mats occurred at Truck Festival 2016. I spent the whole weekend in my tent, only leaving for five minutes: once to be sick, and once to receive a can of Tango my friend had delivered to what I was sure at the time was my death bed. It may sound trivial, but knowing my only escape from my symptoms is to hide inside a baking hot tent has made me feel like I’ll never attend a festival again.
Despite the difficulties illness can bring to music fandom, music itself has a therapeutic effect on chronic illnesses. In the depths of a migraine, when all that’s possible is lying in a dark room with my eyes closed, Get Cape. Wear Cape. Fly can be soothing. During a panic attack, blasting Trash Boat or Enter Shikari focuses my frustrations elsewhere and I can scream away bouts of overwhelming anger.
When I had to go for an ECG to check my heart was in working order, it responded by beating double-time in dread. But listening to Stornoway’s Beachcomber’s Windowsill – an album that reminds me of the comfort of home – calmed me. Before a recent CT scan, the intimidation of the hospital and a visit to the neurology department faded away to London Grammar’s ‘Big Picture’.
While melodies can soothe, there is no comfort like finding lyrics that explain how you feel better than you could yourself. There may not be any songs about Graves’ Disease, but there are tracks about anxiety, sadness, and feeling not-quite-normal. Those speak to me just as much as a sad song during a period of grief, or a ballad after a breakup.
Dry The River’s ‘Bible Belt’ has always been a song to revisit, giving me strength when the physical and mental symptoms feel like too much to deal with. When Hayley Williams sings “all that I want is to wake up fine” in Paramore’s ‘Hard Times’, it’s a reminder to take happiness from the simplest things. Even a line as basic as “I am not afraid to keep on living,” from My Chemical Romance’s ‘Famous Last Words’ can get me through a looming hospital appointment.
When chronic illness is your normal, it can feel as though you’ll never escape the oppressive feeling that, no matter what you do, your body won’t give you a break. But instead of letting your frustration build into resentment, put your favourite album on and remember even some of your most-loved musicians are going through the same thing.
Sia has Graves’ Disease. Glassjaw’s Daryl Palumbo has Crohn’s. Modern Baseball have publicly spoken about their issues with anxiety and depression. The latter have recently had to put their career on hold as a result of these issues, but the honesty with which they’ve spoken about it in the past has resulted in a largely sympathetic fanbase.
Chronic illness always finds itself on the scale between debilitating and devastating – and can make live music much harder to enjoy – but it doesn’t have to take all the excitement out of something that can be uplifting, moving and life-affirming. Even on the toughest days, when you’re unsure you’ll even make it out of bed, music can give you strength. It can make you feel a part of something. When your own body is doing all it can to isolate you, that’s invaluable.
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