How Does Invisible Illness Destabilise Identity?

  • Martha Hine

This is a short article I was commissioned to write for an activism zine called ArtxActivism which was looking at disability in its most recent issue.

How Does Invisible Illness Destabilise Identity?
“People who need help sometimes look a lot like people who don’t need help.” Fitting words from author and activist Glennon Doyle. Health is something we have all taken for granted, at one stage or another; completing the monotonous mundane tasks of everyday without a second thought. For those lucky enough to avoid illness it must seem ridiculous that a warm bath, a smile from a stranger, a bird chirping outside are enough to brighten your day! But with the repetitive unpredictability of poor health, life’s beautiful little moments do not go unnoticed.
Invisible illness is an umbrella term for illnesses that aren’t easily visible to others; this includes mental and physical health. “But you don’t look sick?” – the ignorant question plaguing conversations surrounding invisible illness; does not looking ‘sick’ actually help or hinder identity?
A capitalist society has us believing that our worth is measured by whether we are able to work nine to five, but for those of us facing the never-ending sick day, we are thrust into a box of uselessness and stigma. The way you feel physically takes a massive toll on your mental state. Dealing with the pain and discomfort of illness often induces anxiety and depression. Beyond that, a disability that is unseen gives the illusion of health whilst the individual suffers. Being unable to keep up with your previous self, mourning a life you once lived can be more frustrating than the disability itself. Loneliness and isolation drag you down until life becomes restricted to four walls. Even with that brief description you can understand, without experiencing illness first-hand, the toll invisible disability can take on identity.
With all of this you are bound to lose a sense of who you are and what you want. The future is no longer an exciting adventure but something difficult to think about. I discussed this with @nil.by.mouth.foodie, a chef on Instagram who has chronic illnesses and has not eaten ‘conventionally’ in over six years. She spoke about the time before she received any diagnosis or treatment. When no one believed her she felt “depressed, suicidal, hopeless, unheard and lonely … heartbroken as I thought I’d never find someone relationship wise because of my health.” This illustrates how invisible illness can tear down your whole sense of self, making you doubt if you are good enough for the love of someone else. Relationships are difficult enough when you are healthy let alone when illness is thrown into the mix, but it will never make you any lesser person. Looking healthy, there is an expectation to act like it, and being aware that you cannot keep up can be frustrating and upsetting. But the right person won’t expect you to keep up. They will support you as you support them.
Ultimately, any illness will shake your identity, causing you to question everything that may have seemed so simple in previous years. This mourning of an old life is natural but needs to be in balance with appreciation of the positives. Invisible illness comes with all sorts of complications but finding the good moments, no matter how miniscule, will help restore a sense of self. Pushing through the pain can seem impossible at times but accepting the way you feel, treating yourself with kindness and patience will make a world of difference. There is a whole community out there with invisible illness, suffering the same ground shaking identity issues you are – you just need to find them! Instagram is an amazing platform for this, helping to destroy the isolation many illnesses inflict.