Misconceptions about students with chronic illnesses influence the way teachers and school administrators view children with chronic illnesses. The following are some misconceptions we need to dispel if we are to help our students:
When I was diagnosed with ulcerative colitis (an immune disorder) and migraines with auras, and later, when both of my sons developed various chronic illnesses in their elementary school years, our well-intentioned friends came to us with their sympathies and a host of information about what they had heard caused and cured our illnesses. At the risk of offending these well-intentioned friends, much of what they told me was pretty sketchy. Far too much of the information circulating comes from unreliable sources, old-wives tales, and rumors passed around so long that they are accepted as truths. The lack of understanding about chronic illnesses is unexpected, considering how many people have them. Yet, I have to admit that even I have been guilty of holding some misperceptions, particularly before my kids and I developed illnesses ourselves. Chronic illnesses are complex, and there is still a lot to learn about what causes them, how to best treat them, and why the symptoms and outcomes can differ from person to person.
The misperceptions that circulate around our society influence the way teachers and school administrators view children with chronic illnesses. Misperceptions can greatly affect whether children are given the accommodations they need, and for which they are entitled to, under federal laws protecting students with chronic illnesses. (Section 504 of the Rehabilitation Act and the Americans with Disabilities Act).
The following are some misconceptions we need to dispel if we are to help our students:
1. If You Don’t “Look” Sick, then You Aren’t Sick
When a teacher finds out he will be teaching a student with a chronic illness requiring special accommodations, he might anticipate his student will be in a wheelchair, walk with a limp, or have tubes and equipment attached to her body. Some people with chronic illnesses do need equipment or have visible symptoms, but many more do not. Though people may be very sick they often do not have noticeable symptoms. For this reason, chronic illnesses have been referred to as “invisible illnesses.” I met a young man who had a serious autoimmune disorder of the liver (Primary Sclerosing Cholangitis). This young man’s liver was deteriorating and he was on a waiting list for a liver transplant. His situation was quite serious and life threatening. But, on the outside, he looked fine. Some symptoms common to PSC include abdominal pain, itching, and fatigue—which are not particularly visible to others.
Confusing things even further, many chronic illnesses have periods of health or remission and times when the conditions flare up. They can also be episodic in nature—like with migraines. Migraine episodes can be extremely debilitating, and in some people, the symptoms can go beyond a severe headache, include nausea, vertigo, loss of hearing, and loss of speech. But between episodes, the person recovers completely.
It is very important that teachers understand how serious and real the symptoms of a chronic illnesses can be even when they are not visible. When a teacher tells a student he doesn’t “look” sick, it can sound to the student as though his teacher doesn’t believe him. The skepticism is hurtful, and can also lead to withholding the help a child needs in school.
2. A Specific Illness is the Same in all People
Nearly everyone diagnosed with a chronic illness has been told something similar to this: “Oh, you have [insert illness]?” My friend’s son has the same thing. He just takes some medicine and is doing very well. It’s not that big a deal for him.” The punch line is usually left unsaid, out of politeness: “why are you making such a big deal, then?” The assumption that all people suffering from the same illness have the same symptoms, outcomes, and responses to treatment, is absolutely not true. The same disease can vary widely from person to person. What might be a minor problem in one person may mean several surgeries, hospitalizations, or chronic pain in another.
The intention of comments comparing two individuals suffering from the same illness, are at times meant to reassure people that they will be fine. At other times, it is more accusatory, insinuating that they are exaggerating their medical problems to gain sympathy or to benefit from accommodations they don’t need. Whatever the intention, telling someone that their illness isn’t a big deal can come across as dismissive and patronizing. A friend of mine has a daughter with cancer who is taking chemotherapy treatments. She gets serious side effects from the treatment often requiring her to be hospitalized. My friend spoke to her daughter’s teacher about her condition. The teacher responded that she knew another child with the same form of cancer, who was never absent due to treatments. The teacher expressed her skepticism to my friend, insinuating that her daughter was exaggerating her symptoms to get attention and to be excused from doing her work.
3. It’s Your Fault that You are Sick
It is common for others to blame people with chronic illnesses for being sick. The assumption is that they must be doing something wrong—too much stress, a bad diet, not enough sleep, not enough exercise, etc. First, let me be clear that scorning someone for being sick, regardless of the influence of lifestyle on their illness, is absolutely wrong and discriminatory. Additionally, chronic illnesses are complex, and can be affected by several variables, including genetics and environmental factors, which are not yet fully understood by the medical community. Lifestyle choices are but one variable, affecting some illnesses more greatly than others. Of course, taking good care of ourselves is likely to produce the best outcomes possible. But we also all know people who take particularly good care of themselves, and developed serious diseases. Others have less than perfect lifestyles, and never develop a chronic illness. There is still a lot we do not understand about chronic illness and why they develop in some people and not in others.
One example comes to mind that I think illustrates the point about how little we understand about so many chronic illness, and how unfair and hurtful it is to blame people for their illnesses, even if we think we understand their causes. Until the 1990’s, people suffering from stomach ulcers were told that they had created the ulcers from having too much stress and lousy diets. They were told to stop drinking coffee, and meditate. For sure, these lifestyle changes were likely to relieve symptoms somewhat, but it was discovered in 1982 that the culprit of the majority of stomach ulcers is the h. pylori bacteria. According to the National Institute of Health, taking antibiotics has become the cure for more than 90 percent of stomach ulcers.
Regardless of the influence of lifestyle on chronic illnesses, it is absolutely wrong to discriminate against people who are sick. You can’t deny a student the support he needs to get an education, because you think he should eat a better diet. Our society is best when it protects its entire population and gives everyone equal opportunities.
4. Accommodations Keep Kids from Learning how to Deal with Challenges
This is the tough love argument. It tells kids who are sick that the world is filled with discrimination so they better just get used to it, because no one is going to help them when they get out of school. The school principal and guidance counselor gave me this argument when my older son, Aaron, was in middle school. They told me Aaron should learn to live with some challenges and not seek accommodations in school. At the time, I thought this view was an anomaly, from a particularly ignorant pair…until I spoke with other parents whose children were in different schools, and discovered it was more widespread.
I would argue that students with chronic illnesses are already coping with a lot more than their peers, and many develop a level of strength and maturity unknown to kids who have not suffered in some way. The school does not have to pile on more barriers to teach them a lesson on coping with life. When students have chronic illness, they often have to work harder to keep up with their classes, while coping with physical pain and the uncertainty of whether they will be well the following day. They need to cope with going to school with uncomfortable and perhaps embarrassing symptoms, all the time trying to lead as normal a life as possible, and trying to think positively.
The accommodations mandated in federal laws protecting students with chronic illnesses against discrimination (Section 504 of the Rehabilitation Act and the American’s with Disabilities Act), are intended to provide an even playing field for students. They are not getting accommodations that give them an advantage over other students.
There are legitimate worries that protections in the workplace are weak for people with chronic illnesses, so students are likely to face some additional challenges when they enter the workforce. But, hopefully, they will be given the support and accommodations they needed in school, so they will be armed with a good education and skills. Additionally, I’d argue that the solution to the disparity between anti-discrimination protections in schools compared with the adult workplace is to improve anti-discriminations laws in the workplace, rather than rolling back the laws that exist in schools.