Hiding hidden disabilities

I’d just rushed into the lift with a heavy sigh. Yes! (I wanted to do a fist-pump). No climbing three flights of stairs, otherwise known as Mount Kilimanjaro if like me you live with a painful chronic condition like fibromyalgia.

I was still struggling to catch my breath— on mornings when my exhaustion and pain levels tend to be at their highest, the walk from the train platform, up the escalators and towards the lift can knock the wind out of me. A woman behind me started talking.

“I’m not even going to ask why you’re in here” said the middle-aged woman, smile on her face. She was looking me straight in the eye when I spun around. The older woman beside her, nodded quietly. She didn’t need to explain, I knew exactly what she meant.

I smiled back. “Not all disabilities are visible” I replied.

“So I hear” she said.

The other woman chipped in, “young people nowadays are just as bad as us.”

I would have loved, so loved to continue that conversation, but I was still out of breath, and had to mentally prepare myself up for the walk to catch my bus. It requires a lot of energy you see, even for a 30-something year old who appears well on the outside. On days when the pain is worse in my feet, I still attempt to mask my limp. I won’t dare bring out the walking stick. Hiding often feels like a better option than the scrutiny that follows when I whip out the walking aid, or grimace in pain while limping.

Implications

I got to thinking about how society often perceives hidden or invisible disabilities. When we think about disabilities, our minds may be tempted to conjure up first, (and perhaps only) images of mobility or sensory impairments— disabilities that are apparent to everyone else.

In truth, there are numerous disabilities that don’t offer any cues at all. Invisible or hidden disabilities are not apparent to others, but often affect individuals in the same ways – limiting function, affecting quality of life and often leading to isolation or stigma. Invisible disabilities include chronic illnesses and disorders like fibromyalgia, chronic fatigue syndrome, arthritis, sleep disorders; brain and stroke injuries, cognitive impairments and mental health conditions like depression or post-traumatic stress disorder.

People living with invisible disabilities often face additional challenges partly due to their disabilities not being apparent to others. Often this leads to stigma and discrimination, at home, in the workplace and wider society because to human eyes, we are able-bodied, and we look ‘well’ on the outside. Ultimately, it triggers an inevitable string of implications which may include isolation, depression and anxiety.

Studies have shown that people living with invisible disabilities often suffer more strained relationships than those with apparent disabilities due to doubts and suspicion around their disability status. As a blogger who works to raise awareness of fibromyalgia, I have talked to so many people living with chronic pain and other hidden disabilities, who have said they’ve lost their marriages, jobs, friends, been disowned by their children, all because no one believed they were really ill. It’s appalling to hear the stories of people (a majority of who are women) whose neighbours reported them to social services for ‘faking it’ while receiving government aid. Similar stories flood one of the networks I belong to, of people who continuously fail their assessments for social support because assessors believe them to be ‘lazy’ rather than ill, or ‘not ill enough.’

I understand that there are moral less people out there who try to capitalise on the existence of invisible disabilities for gain, and this does make life harder for those of us who are genuinely unwell. But why should we have to pay the price? Surely general practitioners and specialists must have some inkling as to whether or not a person is genuinely unwell!

To hide or not to hide

Research has also shown that people with invisible disabilities also experience more distress than those with visible disabilities over their diagnoses being found out. And who can blame us? For a long time I questioned whether blogging about fibromyalgia would be the right, and safe thing to do for myself. Revealing one’s diagnosis can be like opening a can of worms – there is always doubt and suspicion. People may sometimes think one is using it as an excuse.

But how else can I explain when I look perfectly fine on the outside, but I have to opt out of a work assignment because I can’t stand all day or lift heavy boxes without injuring myself? Not being open about my disability status might just make me appear as a wannabe diva (I certainly don’t dress the part – my painful feet won’t even smell high heels & in shoe stores I abide by a strict watch but don’t wear policy).

The only way things will get better for people living with invisible disabilities is for perceptions to change and discourse to start. But if we can’t even feel safe enough to be open about our status, then how can we engage in honest conversation?

Until society stops judging and putting rigid definitions on the word disability, we will continue to suffer. People need to be educated, though that’s a tad difficult when many people aren’t open minded. It might sound basic, but it’s the underlying issue. The most fitting place to start with addressing this mis-education is for society to broaden its understanding of the vast, varying world of disabilities.

Gentle Hugs 🙂

Coming soon: 5 misconceptions people have about invisible disabilities