Destigmatising invisible illnesses, creativity and work

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One of the arts industry’s most valuable resources is its people. People are relied on for their passion, their productivity, and in many cases, their willingness to go “above and beyond” to ensure the sector can flourish.

For anyone working in the arts, such expectations can exacerbate stress and tiredness, but for those with an invisible illness hidden from colleagues or employees, such expectations are simply unrealistic and exclusionary. What happens to your creativity and career when you can’t “push through”?

Stigma and preconceived notions of what illness and disability are often limit what people disclose, explains the co-founder of art collective Sickness and Stealth, Jessica Ibacache. This can result in lack of support, isolation, and marginalisation in the workplace and beyond.

‘Invisible illness can affect people in many different ways; no one experience is the same. People are very quick to judge on how someone appears physically, which can really affect the way people with invisible illness are treated,’ said Ibacache.

Larissa MacFarlane, who is participating in Sickness and Stealth’s current art exhibition, Invisible said the expectations of overwork when installing exhibitions or leading up to an arts event make it difficult for those with invisible illness or a disability to participate.

‘I don’t think that this behaviour is good for even healthy people,” said MacFarlane.

MacFarlane’s visual art practice began in her 30’s after her brain injury rearranged her talents. ‘My disability has given me a way to be an artist as my brain injury ignited a passion for creativity and all things visual, but my illness has also made it difficult to progress in my career. For example, accessing formal education, such as university, has been very difficult,’ she said.

The Invisible exhibition aims to showcase how people experience chronic illness, disability, and mental health issues in a multiplicity of ways that are often hidden from view, or silenced. 

It’s opened a dialog for creatives beyond the four walls of the gallery space. How can we not only illuminate the experiences of those with an invisible illness to lift the stigma, but also better support such people to continue their practice or involvement in the arts community?

Invisible illness, visible costs

‘So many people are affected and I think we tend to suffer in silence a bit, ‘ said artist Kirrily Anderson, who suffers from CFS/ME and Fibromyalgia.

‘It’s so helpful to have support, especially within your field or community.’ 

Prior to experiencing an invisible illness, artist Anderson was a freelance graphic designer.

‘The illness put a sudden halt to my career and I was pretty much housebound for three years,’ she said.

Though eventually returning to graphic design upon recovery, it wasn’t easy to balance work with prioritising health.

‘I didn’t want to tell my employer that I had health problems for fear of being judged. I tried to work through any bad days I had, but eventually I decided the best option for me was to work for myself, from home, so I could take things at my own pace when I needed to.’

Keeping her symptoms hidden from others had impacts on other areas of Anderson’s life. ‘I kept my illness on the down low in work circles because I thought it would affect the way people saw how I worked. Because of this it affected my social life way more than my work life.’

For Anderson, her work often has a physical cost on her health. ‘I have to be really careful when I’m creating to not get in the zone too much, to get up and stretch and take breaks. I’d also love to create more larger works, murals etc, but it takes too much of a toll on my body, so I have to limit the larger projects.

‘Also spending so much money on therapies like regular osteo or massage treatments and expensive dietary supplements gets really frustrating,’ said Anderson.

Creative work as a turning point

While careful not to romanticise any experience with an invisible illness by linking it to creative discovery or fulfilment, for Anderson, being diagnosed created a turning point in her career as an artist.

‘When I was severely ill, I was connected online with a community of other sufferers. A lot of these people were creative and I began to notice how being creative actually helped people – and how it helped me too, ‘ she said.

In 2008, she published Creative For a Second, a collection of images and words by people living with CFS/ME.

‘This process showed me how having a project I was passionate about and that involved my skills as a designer as well as an artist was really important in maintaining a certain level of health…Publishing the book made me feel like my life wasn’t wasting away and that even though I was struggling with energy levels and a whole host of symptoms, I could still achieve something.’

For some, creative work can be an antidote to some symptoms of an invisible illness, and puts even a greater emphasis on the need for support.

‘I think for those living with invisible illness – and probably everyone, really – it’s so important to be doing something you love. Even if there are components of what you are doing that you don’t love, make sure some part of your day involves something you do love. It has really helped me keep balanced and avoid relapses,’ said Anderson.

For writer and author Jessica Friedman, her experience with post-partum depression formed the basis of her essay collection, Things That Helped. While such experiences can inspire writing, art and projects, it’s important not to rush or feel pressured to share your experience with an invisible illness.

‘A lot of reviewers have said it’s really raw, but none of it is raw. I had a lot of therapy and have only written about things I had a lot of therapy for because it created a safe distance to write, ‘ Friedman said. 

Dealing with the pressure to be ‘productive’

While the arts industry tends to congratulate the productive and prolific, the pressure to be continually producing and the guilt experienced when you’re not, mostly stems from an internal desire to be creative.

‘No one is standing over you saying you must be an artist, ‘ said Friedman.

Be it internal or external, how does this pressure to be productive impact on a person with an invisible illness?

‘In retrospect, when I was in my early 20’s, what I took for creative energy was just a massive amount of anxiety that fuelled the ability to make things and stay up till three in morning and then get up and work a full time job and then go home and make things again. It wasn’t healthy, it wasn’t productive and it wasn’t my best work, but it was just a means to keep going,’ Friedman explained.

A greater acknowledgment and respect for creative fermentation and patience for the creative process would level the playing field.

‘A lot of the work of writing happens in living. If there is any advice, any creative work is a process and the fallow periods are actually doing something quite wonderful for your work,’ said Friedman.

For writer, editor and theatre-maker Matilda Dixon-Smith, being diagnosed with depression and generalised anxiety disorder just over a year ago has had a varying impact on her work.

‘It has impacted my general ability to be productive and to participate in a five day week, but in terms of my creativity, I found that writing is something I can concentrate on which means I don’t really have to overthink all the time – it is something I can get stuck into and it serves as a bit of a break,’ Dixon-Smith said.

Flexibility in the workplace always for participation and addresses a common misconception about productivity – that more work makes better work. 

Having dipped in and out of the arts sector and spent some time in the corporate sector as a paralegal, Dixon-Smith has seen first-hand how various industries need to improve.

‘I think every sector and workplace really needs to improve how they provide support for people with mental illnesses,’ she said. ‘I think what the arts does well is provide some level of flexibility, which is really important.’

When ambition meets depression

If writer, director and visual artist Samuel Leighton-Dore were to give a TED talk, it would be on the intersection between depression and ambition.

‘I view my mental health and creative ambition as a Newton’s Cradle; one always colliding with and reacting to the other,’ he said.

At the age of 16, Leighton-Dore was hospitalized due to an overdose on anti-depressants. ‘It was a real fork-in-the road moment for me; I realised that my self-destructive behaviour was sabotaging my potential success and hurting my family. That night, while in hospital, I decided that if I was going to stay alive, I’d try my very best to do it well.’

In an industry where there are no clear milestones, set trajectories or determiners of success, what it means to ‘do well’ can be nebulous. For Leighton-Dore, doing well is to continually evolve.

‘Broadly speaking, it means giving myself every chance to succeed and make a living doing what I love. When I overdosed, I realised that I was able to make a choice every day to envision my own future and take small steps toward it,’ he said.

Small steps are key. ‘I often feel completely overwhelmed by the most menial tasks and deadlines,’ said Leighton-Dore.

‘I panic before (and during, and after) phone-calls and occasionally struggle to complete basic administrative tasks, such as returning emails. I have a really hard time completing paperwork, which makes it incredibly difficult to apply for grants, artist residencies or career-growth opportunities. I watch deadlines fly by because I simply cannot bring myself to open the application form, let alone fill it out. I’m sure that sounds strange, perhaps infuriating to some, but I hope those who live with a similar anxiety to mine will understand.’

For Leighton-Dore, diversifying his creative pursuits has enabled him to rotate various passions to suit his headspace and mental capacity.

‘I’ve decided to embrace myself as a “multi-potentialite” rather than limiting myself to just one creative field … When I’m depressed, I write. When I’m anxious, I paint. When I’m feeling unmotivated or stuck, I’ll start a small animation or film project. I’ve always found that I need to have a creative project on the go at all times.’

Visual and performing artist, community facilitator, and emerging curator, darcy t gunk has experienced various illnesses that have impacted their life and career – simultaneously imposing difficulties to navigate, as well as inspiring new spaces.

‘All of my art is focused around the body, and my experiences in living in a disabled, traumatised, trans body. The same experiences that can make it difficult to create my work are also where I draw inspiration,’ they explained.

‘I am constantly compelled to try harder to express the feelings that I can’t name or understand. I’m also committed to trying to carve out spaces for myself and others who are marginalised to be heard in the arts – this means I’m often on the other side of an exhibition, as a curator or events organiser, because I know how difficult this industry is to navigate as someone who is chronically ill.’

Connection to everyday ritual

While connection to work can create meaning and stir inspiration, creativity isn’t a cure-all. What then, when doing what you love doesn’t feel possible, can help create an anchor?

Ritual and connection to the mundane and everyday offer some solace. For Leighton-Dore, it can be as simple as wearing shoes. ‘In terms of working from home when I’m depressed, my partner taught me to wear shoes. Even if I’m at home in my PJs and won’t be leaving the house, wearing shoes is a great way of reminding myself that I’m working.’

For Jessica Friedman, experiencing post-partum depression after the birth of her son was the hardest thing she’s ever done.

‘Ordinarily when you have an illness, it’s understood you can take time for yourself, spend days in bed and put your own survival above any other tasks. But when you have a postpartum mental illness, you just have to keep going with the task of keeping another small person alive, so there is this tremendous job that absolutely has to be done,’ she said.

During the period of severe illness, Friedman couldn’t write, and often couldn’t read or hold a conversation, so connection to everyday ritual became important to feel part of a larger pattern of life.

‘I really leaned into relationships with processes and objects because they have such an innate sense of comfort and familiarity,’ said Friedman. ‘I have one bowl that I cherish; it is the perfect weight and the perfect size, and eating from a bowl that I have used a million times before kept me connected to the patterns of the day when I felt I was getting lost within a particular moment.’

Invisible no more: how the arts community can support

There is lack of recognition that the arts can be ableist, explained MacFarlane. ‘Which leads to a lot of stigma and misunderstandings, as well difficulties for people to feel safe to disclose their illness/disability.’

Communication can be one of the greatest channels to address stigma, MacFarlane said.

‘I think it is really important to be aware that people with invisible disabilities can often appear “flaky” or inattentive, disinterested or even rude. But often they are dealing with unseen challenges such as pain, fatigue, nausea, intense anxiety, hearing voices or brain fog. These things can really undermine one’s ability to be attentive. Scheduling meetings away from noisy, busy, overly lit areas is a good start. It will actually benefit everyone.

‘Ask questions of each other. Don’t assume that we are all in great health, just because we look fine. There is also a huge lack of recognition that our society is really very ableist, which leads to a lot of stigma and misunderstandings, as well difficulties for people to feel safe to disclose their illness/disability,’ she said.

Leighton-Dore agreed, adding: ‘I really believe that if we could work towards fostering a culture of understanding, empathy and openness, we’d be better equipped to nurture our emerging creatives, however set-back some may feel by their mental illness.

‘I think it’s really important that the Australian arts community offers supportive services which align with their initiatives. Application processes can be demanding and complicated, which for many is too steep a mountain to climb,’ he added.

Anderson said: ‘Don’t be afraid, or ashamed to talk about invisible illnesses. Every time I mention to a stranger that I have CFS/ME they tell me they know someone suffering from it, or a similar condition.’ 

When it comes to invisible illnesses and mental health, it is important symptoms are treated like any other physical illness in the workplace, explained Dixon-Smith.

‘Otherwise it’s just not going to be sustainable for us to work the way that we do,’ she said. ‘It is about knowing your limits and pushing for understanding, and instead of asking for it, saying “This is what I need,” and finding out how your workplace can accommodate you.’

For darcy t gunk, there needs to be an emphasis on community when it comes to care. ‘Self-care is a really fraught term to me. I believe it places so much emphasis on toxic, individualised methods of care that ultimately further a neoliberal agenda that is so destructive to disabled and chronically ill people, and to all marginalised people. Some of my work is in disability support, and working with other disabled people so closely helps me to remember that care is a community effort.’

‘Just stop assuming everyone can just “do the thing”. There are so many of us with invisible illnesses and disabilities. The vast majority of artists and musicians I’ve worked with – if not all of them – are disabled, or have chronic mental and/or physical illnesses. Be aware of that and have compassion and patience. Ask people what accommodations they might need. Don’t assume they’ll be ok with disclosing everything about their experiences, but make space for that to happen,’ concluded darcy t gunk.

Invisible will run at VU at Metro West, 138 Nicholson St, Footscray until 27 October.

Invisible illness can present differently in people, and it is important to seek the advice from your GP or a mental health professional.