“But you look fine:” Living with the stigma of invisible illness

By in Sports & Health

Since Bell’s Let’s Talk Day on Jan. 25, I’ve been thinking about ways to fight stigma. Openness and transparency are key elements of a compassionate democratic society, so let me be blunt: I’m 28 and I’ve just been diagnosed with fibromyalgia.

Fibromyalgia affects everything from mood and energy levels to digestion and chronic pain. The label is new, but the symptoms aren’t. Despite a list of physical problems a mile long, most doctorslivingwithchronicillness called me “sensitive” or “depressed” and then looked no further.

Although, it was generally assumed that an underlying condition must be responsible for my diverse array of symptoms, no one could identify the problem. At first, even specialists failed to locate the source of my troubles, so after 10 years of illness, it’s a huge relief to finally have a label that makes sense.

For me, like many others, it took more than a decade to accurately identify my illness. Over the years, I was diagnosed with this and that until my list of medical conditions numbered in the scores — yet no one ever seemed to believe I was suffering.

If you’re struggling with an invisible illness or disability, I’d wager that this condescending and stigmatizing rhetoric will sound familiar: “You don’t look sick. You’re cancelling on me again? I wish I had time to take so many days off. You’re just too sensitive! You’re young enough to take the stairs. You’re better now, though, right? Just push through it. But you’re so young and thin, how can you possibly have anything to complain about?”

The list goes on, because if you happen to be young, slim or marginally attractive, apparently your life is perfect by default. I can’t count the number of times friends and strangers alike have said to me, unaware of the irony, “But at least you have your health!”

It’s human nature to assume that illness takes an obvious, visual toll on a body or that you’re somehow perceptive enough to recognise suffering on sight, but many problems aren’t so easy to detect.

Invisible illness refers to a subset of health problems that cannot be seen on the surface, many of which are chronic, recurrent or lifelong maladies. Synonyms for invisible illness include non-visible impairment and hidden disability.

These umbrella terms cover a wide array of imperceptible conditions including mental health and mood issues, sensory and perceptual disorders, cognitive and attentional difficulties, connective tissue disorders and chronic pain, intermittent physical impairments, autoimmunity and immunodeficiency, digestive and metabolic ailments, and disorders of the central nervous system.

This list is by no means exhaustive, but I hope it conveys at least a sense of the range of unseen impairments that are possible.

Those of us living with invisible illnesses and disabilities deserve your consideration and respect. I may look fine, but try to remember that each of us is mortal, uniquely flawed and deserving of human kindness. Any illness can be hard to spot in its early stages, and some medical conditions will never be visually apparent.

Moreover, you can’t assume that a person’s abilities and disabilities are fixed at a consistent level. Chronic medical conditions can also be intermittent, such as fibromyalgia and multiple sclerosis, which further complicates the issue. Don’t assume people are overly sensitive, dishonest or lazy.

It’s much easier to treat strangers with compassion, if you first give them the benefit of the doubt. Just because you saw someone jogging across campus yesterday doesn’t mean they can give up their seat on the bus today. So the next time you find yourself judging a stranger, remember that health —  like beauty —  is more than skin deep.

Amanda Slinger

Image: Lesia Karalash / Graphics Editor