Send Me More Stories About Chronic Illness
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Multidisciplinary visual artist Chloë Lum wasn’t sick her whole life. She spent her 20’s touring with bands and exhibiting her large-scale visual art installations around the world. Then, eight years ago, she started experiencing symptoms that doctors first diagnosed as fibromyalgia, but now suspect are signs of multiple sclerosis.
As a professional artist, Lum’s chronic illness caused her already tricky balancing act to dangerously wobble. Nor is she alone. Both artists and chronically ill people live with a great degree of financial stress and uncertainty, but these challenges become exasperated for those who identify as both. Professional artists living with chronic illness have to navigate an unreliable income (plus, no paid sick days or health benefits) and flare-ups that cause roadblocks for production. If you’re too sick to make art, you can’t get paid. If you don’t get paid, you can’t afford the very things that help you make art.
So how do professional artists living with chronic conditions manage it? To better understand, we spoke to Lum, along with fellow Canadian artist Alex McLeod, and Sara Rahbar and T. Sydney Bergeron Mikus of New York City. Although these artists have different conditions, they all agree that every artist needs three resources if they are going to make it with a chronic illness or disability: self-care, community, and an unfaltering internal drive to create.
The Importance of Self-Care
Artists who want to stay productive have to take care of their physical and mental health diligently. This can mean slowing down when that’s not what you want to do.
“It took me a long time to get diagnosed because I wasn’t paying attention to what my body needed,” says T. Sydney Bergeron Mikus, a self-described cultural worker who uses art to promote activism. Eventually, Mikus was diagnosed with postural orthostatic tachycardia syndrome (POTS), Lyme disease, and Hashimoto’s disease. “I was following the ‘sleep when you’re dead’ mentality that’s celebrated in the art world, where people get judgmental if an artist is not doing as much work as possible… even if that means sacrificing your own health.”
“I was following the ‘sleep when you’re dead’ mentality that’s celebrated in the art world, where people get judgmental if an artist is not doing as much work as possible… even if that means sacrificing your own health.”
Due to chronic migraines, digital simulation artist Alex McLeod had severe vision problems, but it was only after he shifted his focus from deadline to self-care that they started to go away. “I wasn’t taking accountability for my own body,” he says. “I was eating Domino’s, like, every day and didn’t go to the doctor. It turns out that the migraines are manageable, I just had to take different medication and eat better.”
Contemporary artist Sara Rahbar—whose work spans sculpture and photography among other mediums and who also struggles with anxiety, depression and PTSD—agrees. “It took me years to realize that alcohol, smoking, sugar and dairy trigger mood swings. When I cut that stuff out, I calmed down. The anger, breakdowns and the length of my depressive episodes got better. My mind is clearer and sharper for making work.”
Where The Community Fits In
The artistic community is a vibrant, often supportive, sometimes competitive one. But because the nature of many chronic conditions is invisible, and because artists tend to be workaholics, it can lead some artists to feeling isolated.
That makes empathy, awareness, and understanding in their community a critical ingredient for any artist trying to balance chronic illness with pursuing their work. “So many of us are going through something, or someone close to us is going through something,” warns McLeod. “We can interpret their actions in the wrong way if we don’t understand what’s going on.”
“Don’t expect artists to work for free, and don’t pay disabled artists less than what you’re paying other artists.”
In what ways besides empathy can communities show their support for artists with conditions? For one thing, equal compensation. “It’s mind-boggling that you can legally pay disabled artists sub-minimum wage in the States,” says Mikus. “Don’t expect artists to work for free, and don’t pay disabled artists less than what you’re paying other artists.”
Insisting upon accessibility standards at venues and other institutions is another key way that the community can ally itself with their disabled or chronically ill members.
“It might not be innovative, but I need a comfortable chair with back support,” says Lum. “You’d be surprised how rare this can be.” Making sure that your own art, panel discussion or workshop is accessible for artists living with chronic illness can be an important act of compassion that fosters a community of diverse and talented artists.
Can’t Stop, Won’t Stop
For Lum, McLeod, Rahbar, and Mikus, one thing remains clear: changing careers simply isn’t an option. Though the financial security (not to mention health insurance) of a normal 9-to-5 job might make some aspects of their conditions easier to deal with, says Mikus, “I’ve always been making art, so I don’t know how not to do it.”
In some cases, like with McLeod’s migraines, this deep drive to create can actually exacerbate their condition. Even though looking at screens caused him pain and vision problems, McLeod’s art required him to use a computer for long periods of time. Until he began practicing proper self-care, McLeod just “kept working and tried to push through it.”
“I’ve always been making art, so I don’t know how to do it.”
But for others, like Rahbar, there’s relief f in the art-making process. Since childhood, she’s struggled with mental illness but making art brings her a deep sense of peace. “It’s a reason to be alive,” she says. “Even in moments of doubt, when the suicidal thoughts get really loud, the only thing that makes sense is the work. It sustains me and I am 100% dedicated to it.”
There might be science to back that up. As studies on art therapy explore the link between self-expression and health, it’s becoming clearer that creativity can have a positive impact on chronic illness. A 2016 study, for example, found that 45 minutes of art-making lowered stress levels. The path might be tougher for artists living with chronic illness, but it’s also, paradoxically, a source of immeasurable relief.
Whatever the case, for most chronically ill or disabled artists, the internal drive to create is more powerful than the symptoms. As Chloë says, “’I’m in too deep to stop now.”
