Aiming for an Equal Education…Despite Our Illnesses

Please share your comments, stories, and ideas!  I’d love to hear about your experiences dealing with a chronic illness in schools. Did you get the help you needed from the school? Did your school “get it?” Do you think anything needs to be improved on the treatment of students with chronic illnesses in their schools? — Rachel

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A growing number of students have chronic illnesses. If you count all types of chronic illnesses, at least 10 to 15 percent of American kids have been diagnosed with them, according to the National Institute of Health. Nine percent of children ages 5 to 17, have one or more chronic illnesses that limit their activities to some extent (2012, Childstats.gov).


What are chronic illnesses? A chronic illness often has no cure and usually lasts a lifetime. Though some chronic diseases shorten people’s life spans, modern treatments have allowed people with many chronic conditions to live long lives. Chronic illnesses can go into remission or flare up, but they don’t usually go away. A few examples from a much more extensive list include: Crohn’s Disease, migraines, sickle-cell anemia, diabetes, AIDS, rheumatoid arthritis, epilepsy, chronic fatigue syndrome, asthma, multiple sclerosis, and heart disease.

While chronic illnesses can be quite serious, they are not always noticed by others; people may have serious health problems and still “look fine.” For this reason, the term “invisible illnesses” has been used to describe their nature. Though some chronic illnesses are associated with cognitive disabilities, most are not; so students will vary in their learning abilities and cognitive skills, just like the rest of the population.

Going to school with a chronic illness can be challenging. Students might be dealing with painful and uncomfortable symptoms, need to take a lot of medicines, eat a special diet, or get tired easily. Some may need to have medical procedures, surgeries, or be hospitalized on occasion. Their symptoms may be dull and ever-present, or come on suddenly and acutely without warning. Their illnesses can take an emotional toll as well: students might feel embarrassed about their symptoms around teachers and classmates, angry or depressed about their illnesses, or scared that they will not feel well in school. It can be difficult for students to keep up with school work when they are not feeling well.

Adding to the challenges these students are dealing with is the frustration that their teachers and school administrators do not always understand what they are going through or how to help them get an education. When my older son was diagnosed with several chronic illnesses starting at age 10, we were unprepared for the level of misunderstanding we encountered from some teachers and school administrators. My son has Crohn’s Disease (an autoimmune disorder of the digestive tract), primary sclerosing cholangitis (a progressive autoimmune disorder of the liver), and migraines with auras. We encountered resistance to the accommodations he needed to take care of his health and keep up with his school work. Several of his teachers questioned whether he was “just being lazy” since he didn’t “look so sick,” despite notes from doctors testifying that he was indeed diagnosed with serious illnesses requiring accommodations. We were surprised to find guidance counselors who were misinformed about the laws that govern the treatment of students with disabilities, including the subset of chronic illnesses.

As we began meeting other families, we found that we were not the only ones who were frustrated, confused and surprised at the level of misunderstanding, and indeed, discrimination, our children with chronic illnesses were facing in schools. This is not to suggest that there is a malicious intent; rather, it reflects a subtle yet pervasive problem with the way our society views chronic illnesses and those who have them. Adding to this, is that teachers may find themselves struggling with how to help their students with chronic illnesses without enough training or resources–helping students with chronic illnesses can be complicated and tricky.

Despite the problems students currently face in schools, I am optimistic that we can reduce discrimination and help students get what they need more easily.  Perhaps it will take some teacher training about chronic illnesses.  Or perhaps our civil rights laws need to be more accessible to students and their families, so they know what their rights are and how to seek help in schools. Read more…

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