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School and Ehlers Danlos Syndrome – How to Navigate the Classroom, Obtain Accommodations, Build Understanding

Fall is here and that means school is back in session. For many of us zebras, school (at any level) can be terrifying when our health is unpredictable. We fear the question, “do I even tell the people at school about my diagnosis?”

Growing up, in high school, I missed so many days of my senior year that a school I attended threatened to take away my academic achievement award because of the percentage of days I had missed, despite the fact that they were all excused medical absences. In college, my health got progressively worse and so did my academic performance – until I learned how to manage both academia and my symptoms.

I will tell you that being your own advocate is extremely important when it comes to… well… anything in life, but especially school! Some people will understand and some won’t. This weekend, I met a 10 year old who told me that his teacher bullies him and the school just “doesn’t care.” This, unfortunately, is what many of us experience. On the other hand, Franca Bergunde, a writer for The Mighty, tells the story of when she decided to tell her teacher about having EDS. She says, “He seemed truly interested and even asked me some questions about EDS to understand everything better.

In my personal experience, I have found that by telling teachers about my diagnoses and speaking up about the accommodations that I need, I am able to do better in school. In an interview that I did with Study Breaks Magazine, I explained that sometimes admitting you need help can be difficult, awkward, and embarrassing. But remember that your teachers are human, too. Some will be… difficult, but others will be extremely understanding and helpful! Quite often, the helpful professors want to know how EDS affects you in the classroom and when doing school work, they also want to know what they can do to help.

Further, as a student with a disability, you are protected by the law. Section 504 of the Rehabilitation Act of 1973 aids and supports any qualifying student in preschool, elementary, secondary, and adult education. It is important to note that students who received special education services during their early years of schooling also have protected rights in postsecondary institutions, like college and technological schools but the process of implementing them differs.

In college, it is the student’s responsibility to make your disability or condition known and request assistance. The American Psychological Association explains that in postsecondary schools, a student should “initiate the accommodation process with the disability resource center or office on campus.” The student needs to provide proper medical documentation regarding the needs for disability-related accommodations and will work with the disability resource center to draft an accommodations letter that the student must submit to each professor. As a student, when working with disability resource center and explaining your needs, do not put down the severity of your diagnosis; be sure to explain everything that you need or may need. This may include anything from an extra set of books for kids to keep at home and school, flexibility on attendance, extra time on tests and extensions on assignments, and beyond. I currently have about 12 accommodations that I put to use in my college classes which I am able to use at my discretion and open communication with my professors. Even if it is five minutes before class is supposed to begin or an assignment is due, send an email to your professor letting them know that you will not be able to make it because you have become ill. Kate Gallagher, a student with Ehlers Danlos, says she has an accommodations plan “that allows her some flexibility on class attendance and deadlines during flare-ups, and the freedom to fulfill her campus work-study job tasks in a ground-floor office on those days when climbing stairs is out of the question.

Another concern for many students with a disability is fear of judgement from peers. “At first, identifying as disabled was kind of hard for me,” Kate admits, “but it ended up being a necessary resource.” To my own surprise, when I explained to my classmates that I have a neurogenic bladder and typically get up 6 times to use the bathroom during a 4 hour lecture, instead of judging me, they offered to take notes for me during the time that I missed. They cared. They understood. They didn’t judge me. Kara Walters, an Ehlers Danlos patient who writes for The Mighty, explains how she lost several friends, and even a roommate, who couldn’t understand or tolerate a person with an invisible illness, such as EDS. Despite those who left, Kara met one friend who stuck by her. “She was the first person who entered my life post-diagnosis I finally felt accepted by. She gave me hope that people will understand and still love you for who you are, even if they have only known you a short time.

My advice: speak up and seek help; talk to the Disabilities and Accommodations coordinator who can help you succeed in the classroom; and find friends, true friends, who can are willing to understand and stick by you when things get tough.