Misconceptions About Chronic Illness
by Briana Livelsberger
There are many misconceptions that surround chronic illness. Some of these misconceptions come from a lack of understanding and use of quick judgement to gain an idea of what is going on. Some of these ideas come from stereotypes. But what are common misconceptions about chronically ill individuals?
Chronically Ill Individuals are Lazy
It is often thought that individuals with chronic illness are lazy. This misconception may be thought of as truthful due to the fact that many people with chronic illness have limited abilities as a result of their disease. The chronically ill also have a limited supply of energy, leading to decisions on what one does throughout the day.
One example can be seen in the “What’s Your Excuse” meme. Often, the meme is put with pictures of disabled or chronically ill individuals who either work difficult physical jobs or accomplish amazing physical feats (such as climbing a mountain or running a marathon). Originally, this meme was used as a way for able-bodied individuals to inspire other able-bodied individuals to go out and do things. The thought was, if someone with a disability/chronic illness could do this, then so can someone without those issues. However, I’ve seen it morph into the meme being used as a way to say that, if these people can accomplish these tasks, then everyone else (able-bodied or not) should be able to too.
Everyone has varying abilities and limits, making it that what one person may be able to do may not be possible for another individual. In addition, even the same disease can have varying effects. However, this meme perpetuates the idea that anyone who has the same issue as the person in the picture should be able to do the same thing.
Chronically Ill Individuals are Unreliable
I think this idea probably started as a result of the fact that chronically ill individuals have good and bad days. On the bad days, it may be difficult to get anything done or even to get out of bed. Because of the way that most jobs work in America, someone who often isn’t able to make it into the office or have productive days every day is thought to be unreliable. However, since chronically ill individuals know that they have days where they can’t do as much, they often work harder on good days to make up for it. In some cases, chronically ill individuals are more reliable than “healthy” individuals.
Chronically Ill Individuals Lack a Work Ethic
This misconception is kind of a combination of the misconception of laziness and the misconception about accommodations. I say this because, chronically ill individuals are often thought to lack a work ethic because they’re lazy and they have accommodations that let them get away with doing nothing. However, this is simply wrong. While it’s difficult to get as much done on a bad day and accommodations try to help alleviate the effects of bad days on work, it doesn’t mean that chronically ill individuals aren’t working hard. The accommodations don’t take the place of the work that needs to be done. In fact, most chronically ill individuals put in more work due to the fact that they don’t know when a bad day might hit and also to keep their job (or stay in school). Because of these misconceptions, most chronically ill individuals work harder to prove that they aren’t the stereotype.
Chronic Illness Gets Better
Often, someone with a chronic illness may be asked, “Are you doing any better,” or, “Are you still dealing with (insert disease).” While there are chronic illnesses that can get better in a matter of years or can go into remission for a period of time, most chronic illnesses last a lifetime.
The thinking behind this misconception seems to be a misunderstanding of what it means to have a chronic illness. Without knowing what it means, one may try to gain an understanding of what chronic illness is like by thinking of temporary ailments.
But, unlike chronic illness, temporary ailments do get better and often stay better. Chronic illnesses last long periods of time. Some can quiet down for a short time and then come back. Some go away after a while. Others don’t ever go away.
Chronic Illness Makes Life Miserable
Since chronic illness usually lasts a long period of time and causes a lot of symptoms that, to some degree, affect one’s abilities, it is often thought that life is difficult and therefore miserable.
However, while chronic illness does have its challenges, chronically ill individuals are able to have fun and enjoy life. We learn how to get around our limitations. We learn how to manage our pain. We learn to find things we can do that make us happy.
Chronically Ill Individuals Can’t/Shouldn’t be Happy
It is commonly thought that, because chronic illness is difficult to adjust to and causes a lot of symptoms, that it is difficult to be happy. However, since some think that chronic illness is given as a punishment for something one did early on in their life or even in a past life, people often think that those with chronic illness shouldn’t be happy. In addition, the difficulty of chronic illness also seems to be reason enough for people to think that it isn’t possible and that seeing someone with chronic illness be happy could mean that something’s off with them.
One day I witnessed a chronically ill woman in a wheelchair start laughing in a store with her friend. Hearing the laughter, a woman came up to her and told her, “How dare you? You have no reason to be happy and laughing. I’ve never been so offended.” Then the woman stormed off.
I am a firm believer that no one’s life on earth is meant to be filled with only misery. As such, chronically ill individuals deserve to have happiness in their lives and shouldn’t be forced into other people’s ideas of how they should be.
Chronically Ill Individuals Can’t be Good Partners in a Relationship
Chronic illness comes with its own set of challenges when interacting with others and forming relationships. As a result, people think these challenges may make one unable to give as much to the relationship as their partner can. However, chronically ill individuals have every ability to have meaningful relationships and be great partners.
Chronically Ill Individuals with Physical Disabilities Have Cognitive Impairments
Oftentimes when one has a chronic illness (especially when that illness is visible such as through needing a wheelchair), assumptions are made about what they can or can’t do. However, one thing that happens is that others assume that there is something wrong with a chronically ill individual’s cognition. While there are disabilities and chronic illnesses that can cause one’s cognition to be affected, there are many that don’t keep one from being coherent. However, when a person comes up to a chronically ill individual and there is another person with that individual, that person may speak to the other person about the chronically ill individual rather than directly to the chronically ill individual.
Chronic Illness Affects Everyone the Same
There is often the assumption that chronic illness affects everyone the same way. This assumption may come from the idea that illnesses such as the cold typically have consistent symptoms among the population. However, there are many chronic illnesses (Ehlers Danlos Syndrome, MS, Diabetes, Crohn’s Disease, and Breast Cancer, just to name a few). While some chronic illnesses can have similar symptoms, they all present themselves differently. Even the same disease can have multiple variations.
Chronic Illness can be Cured Using Natural/Alternate Approaches
Individuals with chronic illness at some point or another have probably heard someone ask, “Have you ever tried____?” Usually the recommendation is something like yoga, essential oils, prayer, etc. While these alternative treatments can be useful in managing symptoms, they can’t cure one’s chronic illness. I, myself, find acupuncture and meditation useful in helping me manage my symptoms but these methods can’t change the genes that caused me to be ill in the first place.
Chronic Illness is Always Visible
People often think that chronic illness is always visible, whether it is through seeing something like a wheelchair, mobility-aid, or oxygen tank. However, not all illnesses are visible. For example, my chronic illness is mostly invisible. When I was younger, the most that would have given it away would be the hyperflexibility in my joints. It wasn’t until more recently when I needed a neck brace and finger ring splints. And it wasn’t until last year that I got a central line placed. However, if I’m not wearing my neck brace and if I’m wearing clothes that cover up the central line, I don’t look any different from someone who is “healthy.”
Chronically Ill Individuals are Attention Seekers/Hypochondriacs
Another common misconception is that chronically ill individuals are attention seekers and/or hypochondriacs. This misconception may come from the fact that chronically ill individuals spend a lot of time researching their diseases and any diseases that often go along with them. There are also a lot of chronic illnesses that make one more susceptible to get sick from viruses. As a result, many chronically ill individuals are careful about frequent hand-washing and other precautions. In addition, there are many chronic illnesses that cause one to need a mobility aid, brace, or other piece of medical equipment. Chronically ill individuals who have a visible piece of equipment often get a lot of attention from people, sometimes being asked about what happened or what they have. It is also common that, anyone who knows someone with a chronic illness will give them a lot of attention when they see them. As a result of these factors, chronically ill individuals are seen as wanting attention or as hypochondriacs. Also, some chronically ill individuals don’t always need a mobility aide, causing others to think that it’s fake since they don’t need equipment all the time.
Chronically ill individuals need to be knowledgeable about their diseases in order to effectively take care of themselves. They also need to do what they can to keep their symptoms from getting worse, sometimes in the form of keeping themselves from getting sick. Chronically ill individuals generally don’t ask for attention. “Healthy” individuals give us attention because we represent a perspective that they don’t understand. Oftentimes, we get attention when we want to go unnoticed.
Only Older Individuals Have Chronic Illness
While I feel that this misconception is changing, it is still prevalent. This misconception probably started because most “healthy” individuals only begin to develop chronic illness when they’re older (usually due to the aging process). As an example, I’ve been in situations where I’ve needed to bring up my diseases. Often, I’ve heard people say, “But you’re so young,” in response to telling them about my chronic illness. Usually, I have no idea how else to respond but to nervously smile. However, chronic illness isn’t reserved for one age group. Chronic illness affects people of all ages. While it seems that this is becoming more known, people still usually think of age being a factor in living with a chronic illness.
Chronically Ill Individuals Cause a Great Inconvenience
This misconception may be a result of the fact that chronically ill individuals may take more time to do things. Though, that is mostly a guess based on examples I’ve seen.
For example, one day I was helping a relative with balance issues walk through a grocery store. Not being incredibly strong myself, the task required a lot of concentration for the both of us. We were in a fairly open area, at least, there was plenty of room for anyone to walk around us. However, a woman walked by in a hurry and slammed into me, nearly sending me flying into a chip stand and my relative into a hot pizza kiosk. The woman didn’t apologize. Instead, she kept walking on as if nothing happened.
Another example can be seen in how some people act in more general situations. For example, instead of holding the door open for someone using a wheelchair, walker, or other mobility aid, I’ve seen people rush to get into the building while slamming the door in the person’s face. I’ve also seen people observe that someone in a wheelchair is entering the bathroom and then people decide to use the large stall, forcing the individual in the wheelchair to wait.
However, chronically ill individuals are typically conscientious of where they are in space, compared to others, and figure out ways to best maneuver situations to make things easier for themselves and others. Most of the time, there isn’t much extra time needed in comparison to a “healthy” person.
Chronically Ill Individuals Can’t be Beautiful/Handsome/Sexy
Because of the fact that some chronically ill individuals have physical disabilities, aides, and/or unique physical features that don’t conform to society’s ideas of beauty/sexiness, it is often thought that chronically ill individuals aren’t beautiful or sexy. While many challenge this idea, it is still pervasive throughout the media since there aren’t many models and actors who represent this population.
Chronically Ill Individuals are Better Off Dead
Since people often only think of how difficult life is with a chronic illness, people tend to think that the lives of the chronically ill are miserable. With this belief, it makes sense that people seem to think that we’re waiting for death.
One example can be seen in the responses people had to the death of Stephen Hawking. Stephen Hawking, a man who made many advances in science and who also had a promiscuous reputation, died at age 76. While many wished that he’d rest in peace, many people made comments such as, “Now he can finally be free,” or, “Now he can finally be at peace.” These comments clearly showed that these individuals thought that he was stuck or held back by his disease and disability in life, making his death seem welcome in the allowance of freedom from ALS. While he did have a lot of challenges in life, he was not held back by his disease. His wheelchair allowed him to be able to go places and do things. He never let his disease stop him from accomplishing his scientific achievements.
Another example is when a doctor told a family member of mine that, “they were better off dead because they were living a miserable existence.” However, my relative was offended because they felt that their life was full of happiness and purpose, that their life was worth fighting for. They didn’t see their life as miserable.
Everyone’s life has a purpose and so everyone deserves to live a full and meaningful life. But all of that gets swept away when all that is remembered about them in death is that they were chronically ill.
There are many misconceptions about chronic illness, a lot of which weren’t even discussed in this article. However, the best way not to get caught up in these misconceptions is to learn more about chronic illness and listen to the experiences of chronically ill individuals. We are just like everyone else.