I began experiencing several unexplained neurological symptoms shortly after starting high school in ninth grade, and did not receive a diagnosis for my condition until my first semester in college four years later. Since my symptoms affected my ability to learn and participate fully in the classroom, I often got a lot of questions from curious students and teachers, as well as doctors who were sometimes surprised that I was able to attend school regularly while dealing with multiple health issues. Here is how I would respond to questions/comments about my then-undiagnosed chronic illness, which was later diagnosed as Arnold-Chiari Malformation, also known as Chiari Malformation.
“What do you have?” or “what’s wrong with you?”
About six months after I first started experiencing neurological symptoms, my doctor suspected that I was dealing with the effects of Chiari Malformation, which can be challenging to diagnose on medical imaging in some cases- in my case, it took three years of MRIs before it finally “popped” and the doctor was able to make a definitive diagnosis. During this time, I told people that I had suspected Chiari Malformation and would share some of the ways it affects me, sharing symptoms such as photosensitivity, low vision, chronic pain, chronic migraines, and others.
Even though I don’t have epilepsy or Ehlers-Danlos Syndrome, these are two conditions that people are familiar with and I would sometimes draw comparisons to them because they have similar symptoms to Chiari Malformation. However, I always made a point to share that I did not have these conditions to avoid confusing people.
“Why can you read your phone but not the board?”
I got this question frequently from teachers who were confused by the fact I could see my phone screen but had difficulty reading information on the board a few feet away. One teacher tried to convince my case manager that me being able to use my phone was proof I didn’t actually have low vision, so I showed them that my phone had large print and I could hold the screen closer to my face, or zoom in on what was written on the board with my phone camera. Often times, the answer to the question “why can you do x but not y” is “I use assistive technology for x.”
“Are you getting a driver’s license/learner’s permit?”
This question was extremely common during sophomore and junior year of high school, as many other students my age were getting learner’s permits, taking driver’s ed, and getting their licenses. However, I have low vision and a secondary medical condition that makes it impossible for me to safely operate a motor vehicle, and I would tell people that it wasn’t safe for me to learn to drive. I did go to the DMV to get a state-issued ID when I was 16 though, so I still got to experience the rite of passage that is sitting for hours waiting at the DMV, and got to celebrate with a few friends who took their permit/license tests on the same day I got my ID.
“Why is your head down?”
I often struggled with eye fatigue and light sensitivity from overhead lights, and would put my head down and close my eyes when the pain got overwhelming. If I could go back in time, I would have asked my teachers if we could turn on lamps in the classroom or decrease the overhead lights, as this environmental accommodation would have made a tremendous difference. Wearing tinted glasses also helped a lot with eye fatigue and light sensitivity from migraines, and I still wear them today.
- How I Respond To Questions/Comments About My Glasses
- How Tinted Glasses Help My Light Sensitivity
- How I Explain Chronic Migraine
- Ten Ways To Reduce Eye Strain From Screens With Technology
“It would be a lot easier if you didn’t participate in this”
These comments were very hurtful to me because I wanted to participate in fun activities like the band class photo, school assemblies, movies, concerts, and other fun events, but would receive comments from others telling me that they did not want to have to accommodate for my flashing light sensitivity. Naturally, I wanted to make things easier for others, so I decided to agree with them and missed out on a lot of exciting activities instead of pushing to be included or making modifications so I could participate. My response to someone telling me this now would be “what would make it easier so I can?”
- Learning to Self-Advocate
- Eight Things You Need To Know About Your Disability Accommodations
- Going To Prom With Chiari Malformation
- Navigating High School With a Leg Brace
“Have you tried this medication/treatment?”
People often asked this question because they wanted to help me feel better, and might not realize that some of the things they are suggesting can be dangerous. I’m allergic to a lot of prescription medications, as well as a common inactive ingredient, and have tried others that caused dangerous side effects, so I often tell people that I am not a candidate for migraine medications or other prescription drug treatments. If a person tells me about a treatment, I often will acknowledge it and say “I’ve never heard about that before, I’ll have to ask my doctor!”
Outside of medical treatments, I’ve also been asked multiple times about using essential oils to treat my condition, or other alternative therapies. When it comes to essential oils, I respond with “they smell really good and are great for relaxation, but they don’t really help with my other symptoms.”
“It’s all in your head”
Just like anyone else who has dealt with an undiagnosed chronic illness for a long period of time, I had people tell me the condition was all in my head or that I was faking my disability. Since Chiari Malformation is sometimes explained as having “too much brain to contain” as it causes brain tissue to extend into the spinal canal, I like to joke that it’s not all in my head, but also in my spine. I recognize that mental health and physical health can be intertwined in a variety of different ways, but a structural neurological condition was the cause of all of the previously unexplained symptoms I was experiencing.
- Addressing The Trauma Of Sight Loss
- Why Everyone Should Design For Chiari Malformation: My Talk At ID24 2020
“You’re just trying to get out of doing things”
This was another comment I received frequently from people who were confused over how my condition affected me. An interaction with strobe or flashing lights could completely derail my brain for the day and lead to me missing band concerts, struggling to get through class presentations with a migraine, or cause me to do poorly on an exam I studied for the day before due to pain and brain fog. Often times, the things I “got out” of doing were things that I had been looking forward to, and it was really discouraging that people thought I got some benefit out of not participating.
One way that my family helped me to cope with this was by making sure that as little attention as possible was brought to the fact I wasn’t participating in something. This might mean hiding in another area off stage, stepping out of the classroom before I felt a migraine coming on to go to the nurse, or leaving school to work on assignments at home when I was feeling better. Alternatively, I might be allowed to plan an alternative activity at school with a friend- instead of going on a field trip to the movies for example, one of my friends and I got to hang out in the cafeteria and try a new recipe for cupcakes I brought from home.
As frustrating as it was, my teachers also held me accountable for “trying to get out of doing things” by giving me a zero if I didn’t participate in an activity, so there was no incentive for me to miss class assignments, and I didn’t get extra time to study either. Is this ideal? No, but it was further evidence that I would never be allowed to use my chronic illness to get out of doing things.
“If I were you, I would never get out of bed”
This comment was especially frustrating during the first class period of the day, where I often wished that I was still sitting in bed at home as I was tired. I would typically respond by saying “well, here I am at school!” and I would find strategies for being able to balance my illness with the demands of school and other extracurriculars.
“How can I help?”
This is probably my favorite question that people would ask me, because it showed that they were interested in including me and helping me participate. My answer to this question would depend on the situation, but I was always grateful when someone would ask how they could help me fully participate in an activity or remove a barrier to participation. One of the most kind things I remember a teacher doing to accommodate my condition is that they banned flash photography and flashing lights from class assemblies so that I could participate safely, and I have never forgotten their efforts for inclusion.
- Photosensitivity in the Classroom
- Adapting Band Uniforms For Photosensitivity and Sensory Overload
- Tips For Handling Academic Ableism In The Classroom
Other tips for responding to questions/comments about undiagnosed chronic illness
- People who use mobility aids are not offended if someone that has a different functional level than they do use the same mobility aid, as long as it helps them. So don’t feel self-conscious over using a cane or similar tool because others might “have it worse”- they would want you to use something that helps!
- Students with undiagnosed illnesses can qualify for classroom accommodations in the form of a 504 Plan or IEP if a doctor can document how their symptoms affects their ability to participate in the general classroom
- I avoid language that makes the undiagnosed chronic illness sound like a punishment or curse, as this can perpetuate negative feelings. The same goes for self-deprecating jokes- I don’t want to encourage others to think badly about me or my condition