Why It's Frustrating to Be Told, 'You Don't Look Sick!' When You Have an Invisible Illness

When you live with an invisible chronic illness there’s a phrase you hear a lot: “You don’t look sick!” It’s so common that many of us don’t even bat an eyelid when these words are uttered. But whether it’s from a well-meaning friend, a doctor or a complete stranger, it’s often hard not to question these four simple words. Are they questioning the validity of my illness? Are they challenging me to prove how ill I am? Are they accusing me of faking it? Or are they just simply making an honest observation?

On top of this, we also have to contend with complete strangers judging us on our outward appearance and our need to use mobility aids or services designed to assist disabled living, when we don’t “look” disabled. These confrontations can sometimes be aggressive and intimidating.

But the truth is, the symptoms of the majority of chronic illnesses do not present themselves physically. My pain is not etched in ink on my skin. My exhaustion doesn’t cause a physical difference. And I don’t turn bright green when I’m so dizzy I feel like I’m going to pass out.

These types of comments and judgmental behaviors have happened to me more times than I care to remember, but they still shock me sometimes and I never really know how to respond. Most of the time I brush them off and it doesn’t bother me, but there are times when I get angry and frustrated. But how should I respond?

I recently had a new dentist visit me at home (I know I’m very lucky to have this service in my area). He hadn’t met me before, but he had obviously read my file and, the fact I needed a home visit rather than treatment in the clinic told him how poor my health was.

The first thing he said when he walked through the door was, “I have to say, you look really well” (said in a very patronizing and accusing manner).

Now, to someone with good health this may be a compliment, but to someone with a chronic, invisible illness, statements like this come across as: “You don’t look sick” or “I don’t believe you are as sick as you make out” or, more bluntly, “I think you are faking it.” Am I being too sensitive? Maybe, but you hear these statements a lot when you have an invisible illness, and sometimes it’s hard not to take them personally.

We often get accused of faking it. Like when people judge us for using a wheelchair, even though we can walk. Or when we use a blue badge and a disabled parking spot, even though we don’t have a visible disability. Or when we use a disabled toilet, even though we don’t “look” disabled. Or when people see us on our “good days” and we appear to function “normally,” yet they do not see us on our “bad days” when we are too sick to even leave our beds. We constantly feel like we are having to prove how sick we are, and justify our need to use facilities and services designed to assist people with disabilities or disabling illnesses.

The fact is, the majority of people who use wheelchairs are not paralyzed. We can walk, but we use wheelchairs as a mobility aid. Walking distances is often exhausting and painful. Mobility aids make our lives easier and less painful, but they also help us gain the independence we crave and we deserve.

So why are so many people still shocked and often judgmental when they discover this fact? I believe it’s because of how disabled people, and wheelchair users in particular, are portrayed on TV and in films. Maybe a disability needs to be physically “seen” for viewers to believe in the character? Whatever the reason, I know it needs to change. All disabled people need to be represented in the media for the general public to adapt their views on what constitutes as a disability.

So how do you reply to comments like this? I was stunned into silence for a few moments, and then I replied calmly: “Well I guess that’s why it’s called an invisible illness.”

These comments are not always spoken in malice. Sometimes they are born from ignorance. It’s one of the main reasons why I fight so hard to educate and to raise awareness about invisible illnesses.

Please remember: people have illnesses and disabilities that can’t be easily seen, but it doesn’t make them any less real. Please don’t judge someone on their outward physical appearance; you have no idea what is going on internally within their body and mind.

And most importantly, the most powerful words you can say to someone with an invisible illness are: “I believe you.”

September is Invisible Illness Awareness Month. What frustrating or rude comments have people said to you because your illness is invisible? Do you find people judge you because they cannot see your disability?