Back in high school, people often asked me why my vision was so bad, why I had frequent migraines (read more about my chronic migraines here), why I wore a leg brace several days a week (read more about navigating high school with a leg brace here), and how I simultaneously looked completely normal. It wouldn’t be until after graduation that I could answer those questions, after nearly four years of asking the same questions myself. Going through school with an undiagnosed chronic illness was a unique experience, and today I will be sharing answers to common questions and comments I received from fellow students as well as teachers.
Isn’t there medicine/glasses that can fix this?
WIth the medical model of disability, any type of imperfection is viewed as something that must immediately be cured, so that the person can be considered normal by society again. Sometimes, there is no cure with today’s medical research, and people are left to try and manage their symptoms in the best way that they can with what they have. I would have people without a medical background tell me that I should go on certain medications, and when I would respond that I have tried the medication and it was not helpful, people would dismiss me as not really having whatever symptom we were talking about. Another factor is that it is fairly difficult to cure something when you don’t know exactly what it is. Typically, the best answer to this question is that there is no treatment available yet, but who knows what can happen in the future.
You’re faking for attention
Ah yes, I must be faking my condition. I love having lower grades because I had to miss class, and missing my band concert I looked forward to all year because someone chose to use flash photography when I was getting on stage. I was beyond thrilled to get up in front of my entire freshman English class while spasming and slur my speech so that all of the boys in the class thought I was weird. I adore having teachers refuse to assign me leadership positions because they’re worried I would be too sick. And most of all, I love not being able to do my classwork because I can’t see it, and having the teacher give me a zero! All sarcasm here, but people say that a condition is fake when it is something they don’t understand. What I don’t understand is why I would choose to have such poor health in what is supposedly the best years of my life.
I wish I had your condition, haha!
I wish I didn’t have this, but hey, things happen. There is no reason for you to be jealous that I take naps during the day to get rid of migraines or that I get to sit in the hallway during a movie because of flashing lights- read more about photosensitivity in the classroom here. Comments like this are always interesting to me because it seems like there is no stigma for chronic illness and that it is viewed as something normal. I just laugh off the comment and drop the subject.
What do you even have?
If you can answer this question, then you would be a totally awesome person. My condition baffled doctors for many years. When I first started dealing with symptoms, my primary care doctor told my mom and I “don’t go looking for a zebra in a field of horses,” meaning to not go looking for uncommon or rare conditions. About a year later, he looked at us and said “time to find that zebra!” I’m sure towards the end of our search for a diagnosis it felt like we were looking for a unicorn. Regardless, we always talked about my condition by mentioning the top symptoms, which is usually what I told people who asked me what I had. Eventually, I would start telling people that my doctors suspected I had the condition I was later diagnosed with. I felt comfortable doing this because we were running diagnostic testing at the time and I was also the textbook version of that particular condition. Read more about my condition, Chiari Malformation, here.
If I were you, I would be in bed
Well, I would love to be, here I am at school regardless. Since I deal with migraines and chronic pain every day, staying in bed all day isn’t an option, because I would never get anything done. I have what my friends refer to as a superhuman pain tolerance because of my condition, since I can hold a conversation and participate in activities without collapsing, and I often don’t notice injuries unless they are pointed out to me. While pain definitely is relative, I have learned to function through it and be able to continue living.
Why can’t you do this anymore?
As my vision has gotten worse, my need for accessible materials has grown exponentially. I’ve also found it more difficult to participate in activities like dance. It can be sad to remember the things I was able to do before I got sick, but it’s important to remember there is still so much that can be done. I got more into writing and playing instruments after I got sick, and took up several other interests as well. This may be said a lot, but it is true- don’t focus on what can’t be done, but focus on what can be done. I thought about this when writing about the sixth anniversary of my chronic illness symptoms appearing- read more about that here.
Have you tried essential oils?
I have had several people tell me that my symptoms can be cured by essential oils. I do believe that they can help with certain symptoms, since I use peppermint for nausea and lavender for restlessness, as well as a few other oils, but none of them are able to completely cure my symptoms. I tell people that while essential oils are wonderful, they are not a cure and should not be talked about as such.
Aren’t you a little young to be dealing with these medical issues?
Yes, yes I am. Another favorite response to this question is “apparently not!” Chronic illness can strike at any age, it does not discriminate. While I have had low vision almost my entire life, I have only had my condition since I was around fourteen, and people are frequently surprised by that. Someone once even asked me how I am supposed to be a teenager when I am so sick- since my condition did not stop my aging process, I still got to be a teenager, but not in the same way as a lot of my friends. This is why having friends with the same condition as me is so important- read more about that here.
Why can’t you do this, but you can do that?
The environment I am in greatly influences whether I am able to perform a certain task or not. If I am in a room with strobing or flashing lights, I will not be able to function as well as I do in a room without them. Other factors include my use of assistive technology, my fatigue level, the time of day, the weather, and how much pain I am in. Just because I can do something one day doesn’t mean I can repeat the same task the next day. I wish my teachers would have remembered this more often, I wrote about it in my Dear High School Teacher post here.
It would suck to be you
Actually, no. Although my chronic illness has made me miss out on many experiences, I still have been able to do a lot of things and learn about topics that I wouldn’t have otherwise. I’ve also developed a greater sense of empathy and kindness towards others, because I understand what it is like to be in large amounts of pain and feel like the entire world is spinning. As I like to remind myself, I wouldn’t be studying assistive technology if I never had this condition- read more about why I study assistive technology here. It’s important to be grateful for the opportunities I have. My illness will always be something I have, and never who I am.