What PE taught me about my Rare Disease

I had originally planned for this article to be about my history of failing Physical Education (PE) classes. I suspected that because I was not properly educated on the health issues caused by my rare disease at the time, and had an inability to exercise like my peers, that this had a negative impact on my overall Grade Point Average (GPA) in high school. My original goal was to write an editorial that criticizes the practice of lowering overall GPA due to poor gym grades, because not everyone knows the students could have real physical barriers- including the students themselves. That’s when I came to the more pressing realization that the problem might not fully lie on the PE curriculum, but lack of advocacy and educational resources for students with health problems that are invisible.

I decided to do some research before delving into writing the article because I wanted to make sure I wasn’t incorrectly assuming things about the way PE classes are graded, and whether or not the grade really affects overall GPA at all. Since grading criteria varies from state to state, I looked up the standards for PE in Indiana, where I went to school. Here is what I found.

Overall, students are graded based on their physical fitness and perceived ability, and that grade does indeed have an impact on the overall GPA. I want to emphasize “perceived”, as that is the key issue here. In cases like my own, my rare health condition is NOT visibly evident. I appear to be as healthy as my peers, if only a little smaller and skinnier at the time. My larger issues of fatigue (SAI + Hypothyroidism) and muscle weakness (GHD), which I am aware of now, were not visibly apparent, and I had not been warned about them by my parents or doctors. As a result, my PE teachers were also not informed of this, and they proceeded to hold me to the same standards as my normally healthy peers.

In the PDF explaining Indiana’s PE standards for grading, it states that PE teachers should adjust their evaluation based on what they know of each individual student. They did not know about my health limitations, and either did I, so they could not have known to adjust for those issues. Instead, they tried for tough love, pushing me harder, and encouraging me to keep up with everyone else, insisting that I could do it if I just tried. When I couldn’t, I failed, and I was convinced this was a character flaw. This did not have a positive impact on my self-confidence, and after semesters of failing grades in PE, I started to believe that I must just be this terribly lazy person, and I lost the will to keep trying. If I had had the education and resources to learn about my rare disease at the time, and had been taught to advocate for myself and stand up for those very real limits, I might not have endured that hardship.

“…they tried for tough love, pushing me harder, and encouraging me to keep up with everyone else, insisting that I could do it if I just tried. When I couldn’t, I failed, and I was convinced this was a character flaw.”

Emotional pain aside, my failing PE grades also impacted my overall GPA, which was already not the greatest due to the aforementioned self-esteem issues and difficulties staying alert in class, plus all the time I missed from school due to frequent acute illnesses, another result of my larger health issues. I struggled a lot in school, and I do firmly believe that lack of knowledge about my medical situation largely contributed to this. If my parents had been better educated on the impact these symptoms would have on my quality of life, they might have been more compassionate when dealing with me when I was struggling. Instead, I was called lazy and accused of not caring.

My step-mom in particular was exceptionally cruel. On quite a few occasions, she would call me into the kitchen while she was preparing dinner so she could demean me and talk down to me, and I was made to stand there and just listen while she did it. I was not allowed to defend myself, as that was considered “talking back”. She would ask me questions, but they were all rhetorical. I can still hear her words in my head- “it all boils down to laziness” was her favorite phrase, but she also liked to inform me that I would be “living in a cardboard box on the streets” some day if I didn’t try harder. Of course, she only had these “discussions” when my dad wasn’t around to hear them. I found out later he was completely oblivious to her abuse, and I don’t hold him at fault for that.

I understand that parents need to encourage their children to succeed, but I was struggling in ways that I could not fix on my own. I needed help, and all I got was harsh criticism and harsh punishments that even now as an adult I look back on as extreme and destructive to my emotional health. If I had someone- perhaps an educational volunteer from Riley where I was diagnosed- advocating for me, teaching me about the reality of my situation and helping me to develop techniques I could use to lessen the burden so that I could have the same chance as my peers, I would not have struggled as much as I did. My GPA would not have been as low, and I might have been able to attend the college I had dreamed of attending. Despite my poor grades, I loved learning, and I had ambitious dreams for my future. I wanted to succeed, I just didn’t get the same chance as everyone else because of the rare disease I was not properly educated on.

After failing PE for three years in a row, I guess they eventually gave up on making me take that class again and put me in Health class instead, which would give me the credits I needed to graduate without the physical requirements. Around the same time, my step-mom left my dad and moved out (best day of my life) and I no longer had to endure her emotional abuse. Around that time, I started to gain some confidence and really stand up for myself. I realized that I was experiencing physical symptoms. I knew I had SOME sort of health issue because I had been taking medications to treat it since I was 13 when I received my diagnosis, but I had always been told that as long as I took those meds, I would be “normal”. This was not the case, and I started to acknowledge that.

Instead of writing off my habit of falling asleep in class as “laziness”, which I knew deep down was not the case, I started to look for ways I could combat that. Coffee was not allowed at school, but I started bringing a thermos of it with me every day anyway. Only one particularly strict teacher ever complained, but I think the assistant principal knew after a long history of me being disciplined in the past for falling asleep in class that coffee was probably helpful in my case, so nothing was ever done to stop me. Caffeine habits aren’t healthy either, but I was able to stay awake in class once I started doing that. Miraculously after those changes (and this shows on my high school transcript), my GPA increased tremendously.

My last year and a half showed my true ability, once I stopped believing the lies I had been fed about character flaws that were in reality very real and well-documented physical symptoms of my rare disease. It took me an extra half of a year to graduate, but I made up for three years of poor performance in a short amount of time, and I cherish that diploma as one of my great achievements against the odds. 

It still took me many years to truly find the resources and learn about my rare disease. I didn’t fully grasp the reality of my situation until my health kept failing me over and over again when I attempted to go to work. I have a great work ethic, my previous bosses would gladly back me up on that, as would groups where I have volunteered in the past, but my body just could not keep up with gainful employment. After repeated admissions to the ER for adrenal crises, I decided to file for disability. I won after a long two year battle complete with assessments, appeals, a lawyer, an unusually harsh voc rehab representative, and a very thoughtful and considerate judge.

Throughout that journey, I had to learn to be my own advocate and learn everything I could about my conditions. I was faced with doubts even from people very close to me. I held firm in my assertion that my physical limitations are real, and I did my best to educate those doubters with all the information I had available from scholarly articles to testimonials from other patients with the same diagnosis. When I finally won my disability case, that validation caused many of them to acknowledge that I had been telling the truth. There are always going to be SOME people who refuse to believe what they can’t see with their own eyes, lab results be damned. I had to learn the harsh reality that this kind of doubt is common. 

In order to combat that widespread ignorance, I make efforts to advocate for awareness not only of rare diseases like my own, but all invisible chronic health problems experienced by children and adults alike. Already, I have been overwhelmed with feelings of gratitude, as some people have taken the time to reach out to me and say that my advocacy work, videos, and articles helped them explain our shared diagnoses with their loved ones, but the most powerful feelings of gratitude I have ever felt came after caretakers of children with my condition had reached out to contact me either to say thank you or ask questions, seeking advice on how they can help their newly diagnosed child or dependent.

I want to reach across the divide of space and time and hold my younger self close, and tell her everything I know now. That she isn’t lazy, or stupid, and that she is so strong for enduring what she had already. Obviously, I can’t do that, but I take so much comfort in knowing that sharing my story and advocating for awareness might be helping other children avoid some of the pain I went through when I was their age. That in and of itself is fulfilling enough to inspire me to keep up with this work.

In conclusion, I still think it’s ridiculous that PE grades, which in my state are partially reliant on actual physical performance, have an impact on GPA. I do believe PE classes are extremely important and all students should be expected to participate based on their ability, but putting a grade on such a class acts as a hindrance in cases such as my own. I would like to see future standards for PE reflect the reality that some students have medical conditions that are not apparent and may impact performance, so the PE grade should be held separately and NOT influence GPA overall.

I also think it should be a regular practice that people diagnosed with rare conditions should be assigned an advocate who can counsel them as they navigate life with whatever complications they may experience, so that they can be prepared and take action when they encounter them. Yes, we have specialists who are well educated on what they diagnosed us with, but they are very busy individuals, and tend to be more analytical when someone who is struggling with their condition could benefit from a more empathetic coach who is also well-educated and has more time to explain it in ways the patient can understand. This advocate could help explain the condition to a child’s principal, or even their primary care physicians who might not have encountered such a diagnosis before. They could have a number to call or an email address so that the patient or their parents can get access to information or ask questions if they have any. If I had had such a resource, I can’t guarantee my parents would have kept in touch much, but I most definitely would have learned a thing or two from them had we met so I could have been better prepared as I grew up with my condition.

I understand that some people might claim that acknowledging you have limits might encourage someone not to try as hard or lead them to believe they can’t do some things, even though they might actually be able to. I acknowledge that this may be a concern for some parents deciding whether or not to inform their children about their diagnosis, but I vehemently disagree with avoiding the topic because the alternative is that the child is led to believe they are personally at fault when they are experiencing real symptoms that they can not control, and I can tell you from experience that is a soul-crushing feeling.

On a much lighter note, I am happy to report that cases like mine are less and less likely to go undiagnosed for as long as it had for me thanks to expanded newborn screening efforts! When parents are given resources early on about the existence of a medical condition in their infants, those children are much more likely to thrive and have a better shot at life. I have been contacted by a few parents who told me their baby had been diagnosed with Panhypopituitarism thanks to screening at birth, and this gives me so much hope for their future, as receiving treatment early on is crucial for long-term health! If you live in the United States and would like to help support these screenings, please ask your Member of Congress to co-sponsor the Newborn Screening Saves Lives Reauthorization Act (H.R. 2507 / S. 2158), as many of these screenings are in jeopardy of being left out if this is not reauthorized by congress.

Thank you so much for taking the time to read my story. I’m always nervous about sharing the more emotional experiences I’ve had with this rare disease, but I really feel like being honest about my experiences might help someone else. I really hope it does. 🙂

meme credit: wheneds on tumblr. Image description: Zebra head with a colorful background, text on top reads “You’re too young to have that problem!” Text on bottom reads “Thanks, I’ll let my disease know”

Featured photo courtesy of Vladislav Vasnetsov from Pexels