Top 4 Statements Chronically Ill People Do Not Want to Hear
By Jaqueline | @j_child | May 19, 2019
I’ve heard my fair share of these statements, and unfortunately, it is a commonality among the chronic illness community. Most people do not understand the complex situation of chronic illness; therefore, they use these statements to try to make sense of it all. Even though people frequently have good intentions behind their offensive discourse, it doesn’t make it right.
1. “You should try _______ (diet, natural remedy, medication, etc.). “ While people typically have good intentions when recommending treatments, it can often offend chronically ill people. Most people do not appreciate unsolicited advice, and those with chronic illness feel the same. A chronic illness is extremely complicated and more likely than not, acupuncture (or any recommended treatment) is not going to cure it—and chances are, we have tried it. When a layperson gives a chronically ill person unsolicited advice, it can come off as dismissive. There is no easy fix to chronic illness and by a layperson recommending a treatment makes disabilities seem simple.
2. “You are so lucky you don’t work!” This one hits hard—what I would do to be able to work. There is a stark difference between choosing not to work and being unable to. Not being able to work means that pain and exhaustion take control of the body. This statement exemplifies people’s ignorance of disabilities as it implies that one would rather be chronically ill than to be able to work. It minimizes chronic illness by suggesting that every day is like a Saturday for disabled people. What people do not consider is the pain that confines you to the bed, the constant doctor appointments, and the lack of energy even after a good night’s sleep. Not only does this statement dismiss chronic illness, but it is also entirely inaccurate. Many chronically ill people have obtained degrees, trained for a specialty, and have worked hard to fulfill their professional dreams only to realize that chronic illness prohibits them from doing so.
3. “At least you’re not dying!” When people say this to chronically ill people, I question their intentions. To me, hearing this tells me to stop “complaining” and to recognize that my situation isn’t that bad. Are terminal illnesses the only ones that deserve empathy? Although some chronic illnesses are not terminal, there are still consequences, such as pain, fatigue, immobility, and many more. While many chronic illnesses are not fatal, it does not mean they aren’t serious. There is always someone whose situation is worse than another, but that is simply how the world works. It does not help anybody to compare illnesses and compete for the “sickest person” title. Sure, there are some illnesses that are more manageable than others, but in general, pain and disease are relative to the person experiencing it.
4. “But you look great!” I think everyone with an invisible illness has heard this one. Awareness of invisible illness is growing, but people still struggle with recognizing how ignorant this statement is. A person’s looks should not justify the severity of an illness. When someone tells me that I don’t look sick, I say in my head, “What do you suppose pain looks like?” If only people could see the insides of our bodies, then maybe they would start to understand. This statement perpetuates the stigma of disability—many people assume disability looks like a wheelchair, a bald head, or a body deformity—and leads those with invisible illnesses to feel the need to prove their disability. Looking well while being chronically ill does not delegitimize a person’s experience.
Jacqueline is a 23-year-old suffering from UCTD and other illnesses while living in Colorado with her service dog. She spends her time playing guitar, painting, and hanging out with friends and family.