Simply judging health by what we see can be damaging – or even deadly – for people with invisible conditions

You look so well.” I remember how my heart sank every time I heard those words, how they’d choke like a rotten old rag across my mouth, smothering any impulse to ask for help. Whenever a friend, a colleague, or some distant relative would say “You’re looking well” or “You look great”, it wasn’t gratitude or flattery that I felt. Instead, I’d feel invisible, like people were looking, but they didn’t really see.

The turmoil in my mind and body was a burden only I could know, coerced into secrecy by well-meaning comments from the wilfully oblivious. “Just once,” I remember thinking, “I wish someone would ask me how I am, rather than jumping to conclusions. Just once, I wish someone would let me acknowledge that I’m not OK.”

“You look so well” is a seemingly harmless phrase, maybe even a compliment in the eyes of some. We mean no ill when we tell someone they’re looking well; after all, it’s seen as the root of all good to look the picture of health. But there’s danger in the way we conflate appearance with health, and assume someone is ‘fine’ just because they don’t look how we might expect a person in pain to appear.

Invisible health conditions are by no means rare. Around 80% of disabled people have hidden impairments, including those with physical conditions, such as asthma, hearing loss, or diabetes; neurological disorders such as multiple sclerosis, epilepsy, or fibromyalgia; or mental health conditions such as ADHD, anxiety, post-traumatic stress disorder, or an eating disorder. On the outside, people with invisible health conditions might appear well, they might even act it, too, but their internal reality is a different story.

Yet the stereotypical imagery of disability as someone with a markedly visible impediment, usually a wheelchair user or someone with a discernible mobility restriction, persists.

A survey by the charity Crohn’s and Colitis UK found that 93% of the public said they would challenge a healthy-looking person for using accessible facilities, because they believe they are ‘standing up’ for the rights of disabled people. This means that people with invisible conditions are faced with the added anxiety of ‘proving’ their disability – an experience that can be intimidating and humiliating.

In fact, 29% of people in the survey said they’d been refused access to facilities because their conditions aren’t visible; 61% of negative experiences faced by people with invisible conditions when using accessible facilities included verbal and/or physical abuse; and 16% were made to feel worthless or ashamed for using an accessible facility.

Despite the old adage, people still tend to judge a book by its cover. Our opinions of others are often informed by the way they look. We scroll through social media, barely glancing for more than a second at the endless stream of selfies from friends and strangers, captured at their best moments, and we think how perfect their lives must be.

We envy that single second captured on a small screen, creating a whole narrative for that person based on our observation, never stopping to think what troubles could be festering underneath.

Of course, people aren’t intentionally shallow. We don’t intend to be unfair when we’re so quick to judge. But society is steeped in appearance-led inferences, from whether someone looks professional enough to qualify for a job, to whether someone looks repentant enough to avoid prosecution.

There’s more to health than meets the eye. It’s about time we paid attention to how people really feel

We’ve all been hoodwinked by this tyranny of aesthetics, and misled to trust first impressions before picking apart the unconscious biases behind them.

When you don’t look sick, more often than not you have to fight to be validated. You have to argue your way to legitimacy, and make people ‘see’ your pain in order to be believed. Many people with mental illnesses, such as depression, anxiety, and eating disorders, fail to receive timely referrals and adequate mental health support because, in the eyes of health-care providers, they don’t look ‘sick enough’.

Aesthetic biases in health mean that people with invisible conditions often feel like they have to be visibly on the brink before anyone will take their health seriously, putting the lives and wellbeing of many in jeopardy.

I spoke to chronic illness blogger Natasha Lipman about the effect this can have on mental health. “People, especially young people, living with invisible conditions, often face a huge amount of stigma,” says Natasha. “Because they don’t look sick, they often have to balance the fine line between constantly disclosing in uncertain circumstances in order to get their support needs met, and potentially facing disbelief, or even harassment.”

Natasha uses her online platform to address the often-unconsidered emotional labour that accompanies living with a condition the rest of the world can’t see.

“The lack of understanding of invisible conditions can touch every aspect of someone’s life, from being offered a seat on the Tube so they can get home safely, to having their access needs respected so that they can continue in work,” says Natasha. “Having to beg for support and understanding, and feeling pressured to disclose private medical information – often to strangers – can be an incredibly challenging experience.”

There is a common mistaken assumption that those with invisible conditions are simply lazy or opportunistic, and this impacts how society responds to their requests for aid.

“I noticed a huge shift in how I was treated once I made my disabilities visible in public, versus quietly trying to push through as best I could,” Natasha adds. “Over time, this chipped away at my confidence and caused increased anxiety at the thought of having to navigate so many hurdles.”

The scrutiny and disbelief faced by people with invisible conditions was also expressed by Game of Thrones actress Emilia Clarke, who recently opened up about her struggles with depression and recovery from two brain aneurysms. Writing in the mental health anthology, It’s Not Okay to Feel Blue (and other lies), compiled by activist Scarlett Curtis, Emilia said: “If only I had a cast on my leg or a patch over my eye, a sign that said CAREFUL, WARNING: THIS GIRL IS UNWELL, I might have seen the ways in which people are capable of showing compassion.”

The increased fetishisation of health also hasn’t helped matters. With the rise of wellness as a trend and commodity, we’ve become so consumed with looking ‘healthy,’ so infatuated with performing self-care, that we’ve forgotten the importance of health, independent of how others see us. We’re more concerned about whether we look fine than whether we actually feel it. This presents a dilemma for people with invisible conditions, wanting to be heard and validated in needing support, while also clinging to the sense of value, praise, and privilege that comes from looking ‘well’.

There’s more to health than meets the eye. It’s about time we paid attention to how people really feel, believing them when they ask for help, and giving them a safe space to be open when things aren’t OK.