“But you don’t look sick!”
Chronically ill patients hear this phrase again and again from friends, family, and colleagues alike. People assume they’re making a valid argument, when it is nothing more than a biting attempt to invalidate your illness and discredit your suffering. Rooted in ignorance, it does nothing but create resentment.
A lot of people who are chronically ill or disabled do not, in fact, look sick. But that doesn’t mean the illness isn’t real. It simply means that many patients have what’s known as an invisible illness. In other words, the symptoms “are not always obvious to the onlooker, but can sometimes or always limit daily activities” (What is an Invisible Disability?, 2016). What’s more, “approximately 96% of people who live with an illness have an illness that is invisible. These people do not use a cane or any assistive device and may look perfectly healthy” (Statistics, 2014).
But it’s not just about mobility. Invisible illnesses are obscure for a myriad of reasons:
- It’s what’s on the inside that counts. Sometimes, you can’t see the illness because the disease manifests internally. You can’t see joint damage from psoriatic arthritis, you can’t see the painful lesions from ulcerative colitis, and you can’t see the defective collagen that is the hallmark of Ehlers-Danlos syndrome. People can appear normal on the outside, but they could be enduring crippling migraines, organ damage, or an entire list of maladies that you cannot see.
- The symptoms are intermittent. People with chronic illness have good days and bad days. They have symptoms that come and go. There are moments of bend-bound misery and moments of borderline normalcy. The symptoms might diminish from time to time, but the illness certainly does not.
- Mum’s the word. People who are chronically ill often feel terrible. They’re exhausted, in pain, and tired of being sick. But they also don’t want to complain too much. They don’t want to seem weak, overdramatic, or unappreciative. They often don’t vocalize their struggles, because sometimes, being strong is the only choice they have. Sometimes, it’s all they know.
- Sick people have fun, too. Being chronically ill does involve E.R. visits, hospital stays, surgeries, and days in bed. But sick people like to go out, too. They enjoy dining out, movies, and socialization, just like everyone else. It might require several medications and up to a week of recovery, but sick people like to have fun, too.
- If we can’t heal it, we conceal it. Chronically ill people often do look sick, but they know how to hide it. Makeup hides bruises, rashes, acne, dark under eye circles, scars, and a sallow complexion. Those that deal with hair loss use wigs, hair extensions, and hair products to further conceal evidence of disease. Strategic clothing choices can also hide swelling, scars, and other external signs of illness. Just because you can’t see it, that doesn’t mean it’s not there.
- The symptoms can be subtle. Illness is not always conspicuous. In fact, patients can endure significant health problems for years before a doctor even believes that something is wrong. So, if eight years of medical school can’t always help a doctor detect disease, what makes you the expert? Before you harass that woman walking to her handicapped parking place, and before you question that man who uses a wheelchair only half the time, think very carefully about your untrained eye – and your biased mind.
Having a chronic illness is difficult. It is often a life-sentence of surgeries, doctor visits, and perpetual sickness. When people voice their premature judgments and ignorance, however, it only makes the experience worse. Instead of pouring salt into the wound, it helps to offer support, assistance, and kindness. Some illnesses may be invisible, but the patients are not. And it’s time to see them for who they really are.
Statistics. (2014). Retrieved February 23, 2016, from http://invisibleillnessweek.com/media-toolkit/statistics/
What is an Invisible Disability? (2016). Retrieved February 23, 2016, from https://invisibledisabilities.org/what-is-an-invisible-disability/