What It's Really Like To Live With An Invisible Disability

The young woman twiddled her Edinburgh Festival staff lanyard and gave a loud, frustrated sigh. She was no more than 21, we were three-quarters into the August arts festival that colonizes Scotland’s capital annually, and I could tell she’d had enough of everyone's unreasonable requests. Except I hadn’t made one.

I'd just arrived to see a play based on Jurassic Park, only to discover that the venue was up five flights of stairs. It happens. There are thousands of performances sprawling across the capital, and it’s impossible to research every venue when you’re packing in five shows a day. No biggie: I just asked if there was an elevator.

"There is, but I’ll have to ask if you can use it," the woman replied, before speaking into her walkie-talkie. "Wait here. I’ve called for the manager," she added.

Time ticked towards curtain up, and my friends were looking nervous.

"Can I just go in and use the lift myself?" I said hopefully.

The girl scowled at me.

I told my friends to go. My husband waited with me.

"Is anyone actually coming?" I asked the girl again.

"The disabled entrance opens directly onto the stage," she replied, as if that were an answer.

With a minute until the show started, I sent my husband running up the stairs to catch it. My door guard was still huffing and puffing. I knew what was coming. I’d been through this before. Her whole reaction had been as if I were asking for something outrageous. And sure enough, with a triumphant look, she said, "You’ve missed the show. No late admittance."

"I’d still like to speak to the manager," I said, feeling myself blush. Alone on the street, I didn’t feel so confident asking for my rights.

She gave me a long look up and down. I’m 35. I was wearing Zara denim cut-offs and a Marc Jacobs sweater (sale bargain). My hair is highlighted, and I’d blow-dried it. I wasn’t wearing much makeup, but my nails were gel manicured. She thought I was a diva. A Mariah Carey wannabe who didn’t do stairs. Some kind of entitled jerk. She raised an eyebrow and with pointed emphasis said, "Can I ask exactly what is wrong with you?"

And I felt sorry for her as I explained, "I have a degenerative connective tissue disorder that, among other things, means I injure and dislocate easily, and my mobility is compromised. I find stairs very difficult."

The moment the word "degenerative" came out of my mouth, her face fell. She was mortified. She’d made a wrong assumption about me. She was young, she didn’t know better. It’s possible she’d never met anyone like me.

Or more likely: She had, and never realized. I am one of the 11 million people in the UK estimated to be living with a limiting long-term illness, impairment, or disability. There are no statistics on how many of those 11 million have an invisible condition — the term used to describe a wide spectrum of hidden disabilities or challenges that are primarily neurological in nature. But based on similar data studies carried out in the US, we could estimate that 74% of those who live with severe disability do not use either a wheelchair, a walking stick, or a cane. In other words, they, like me, often don’t have a visual "tell" that they are disabled. And that is at odds with what many people think someone with a disability looks like.

The Edinburgh Festival worker wasn’t the first to treat me as if I were trying to cheat the system. It happens all the time. Just a few weeks ago, a bartender refused to give me a key for the disabled restroom unless I produced medical proof and history in front of a packed pub. (Seriously, who thinks hitching a ride in an elevator and using the facilities in an accessible restroom is a winning scam?)

People may think they’re doing a good thing — protecting services for those whom they believe truly are disabled — but it’s time for greater awareness. It’s humiliating to have to share personal information just so you can pee. It marks you out as "other." People look at you differently. You quickly become someone to pity, when all you wanted was a glass of wine and a whizz. Able-bodied people aren’t required to give intimate details about their health in front of strangers. Why should I have to justify my need to use a disabled bathroom or the elevator? If someone has gone to the trouble of lining up at a bar to ask for a disabled restroom key, as opposed to just popping downstairs to the main restrooms, chances are there’s a reason.

As disability cuts are rolled out, there’s an increasing sense that those with disabilities are only ever a drain on society. In 2015, an open letter from Sam Cleasby to a woman who scoffed at her for using a disabled restroom went viral. Sam is a glamorous 33-year-old who suffers from the invisible condition ulcerative colitis and wears a j-pouch bag that collects fecal matter. In the same year, Corinna Skorpenske’s online response to this note left on her car went viral: "You should be ashamed!! When you take a handicap spot an actual disabled person suffers!" Corinna was with her 16-year-old daughter, who has the invisible but debilitating and painful condition lupus, which severely restricts her mobility. This was the third anonymous note Corinna had received.

Anyone with an invisible condition will recognize this attitude all too well. The reason the Edinburgh Festival worker couldn’t get her head around me being disabled is the same reason why people doubted Sam Cleasby, Corinna Skorpenske’s daughter, and countless other sufferers of invisible conditions across the world. People expect those who are disabled to look like victims. Newsflash: Disabled people aren’t some Dickensian throwback stereotype. We take pride in our appearance; we like going out for a drink and a laugh; we have careers, deadlines, lives, loves, and family. We look just like you. Living with an invisible disability throws up enough challenges; don’t let your attitude be one of them.

Angela Clarke's new novel, Trust Me, is out now.