Charissa Graves
From the Graves
This week, I had a conversation with the family of Jocelyn Treaster, the cheerleader from Hutchinson High School who was left unable to walk after an injury suffered during practice. They shared her new diagnosis of functional neurological disorder (FND), and it got me thinking about my experience with that same condition.
According to the Centers for Disease Control and Prevention (CDC), more than one in four adults in the United States live with some kind of disability. And yet, when my body began failing me a few years ago, no one knew what to do with me, and they certainly didn’t know how to help me.
This experience lives in the back of my mind. It wasn’t that long ago, in the grand scheme of things, that things changed for me, but I try not to dwell on it.
Granted, my diagnoses are the type that cause doctors to say things like, “We know something’s wrong, but we don’t know what’s causing it or how to fix it,” which is really encouraging.
When I got sick with dengue fever on a school trip in 2022, I was forced to return home early because I was still experiencing brain fog and fatigue after about 10 days because I “should’ve been better by then.” While I was later able to do some of my own research to find that there had been studies on the long term effects of that specific illness, it wasn’t until 2024 that a major agency such as the CDC had affirmed that fact publicly. At that point, I was already knee-deep in specialist visits, lifestyle changes, and unanswered questions.
Even after receiving multiple new diagnoses, doctors would basically just send me home to figure it out for myself. No referrals, no resources, no guidance. Maybe, if they were being particularly vigilant, they’d tell me to try working out; as if I wasn’t actively fighting to get out of bed and my bones didn’t feel like they were trying to escape my skin. Things that could’ve been accomplished in one visit took several because no one would suggest or even consider certain options until I went home and did hours of research just to know what to ask for.
I did, admittedly, question why the people with multiple degrees in medicine weren’t the ones with the suggestions for treatment–or even management. Multiple reasons came to mind, bias based on age, gender, and weight being the most likely contenders in my mind, but I also understood that the system I was under had a shortage of staff, seemingly constant strikes and shortages, and overwhelmed the people and resources that were available.
Eventually, I learned to manage. My salvation came in the form of other young people living with disability and chronic illness. They showed me the ways to cope and advocate for myself, and that it was possible to have additional needs without being a burden, even if I still feel like one sometimes.
They taught me to laugh when I wanted to cry after someone looked at me strangely for using a mobility aid, and that I’m not obligated to make a stranger comfortable with my answer to their invasive medical question.
When Jocelyn’s family was telling me about her experience, and the mistreatment that came with it, I’ll admit that I got a little emotional. People are shockingly at ease taking advantage of those that they perceive as vulnerable, and I can’t help but attribute it to ignorance.
There are so many conditions that come with stigma, especially for young people. There’s this insane belief that a young person with a mobility aid must be “lazy” or “attention-seeking,” which is misinformed at best. I can assure you, being disabled is a lot of work and it takes a lot of energy, and I don’t think that there’s any amount of attention that would make it worth it.
FND is a rather obscure condition; I didn’t know about it until I was in a neurology office being told that I had it, and even now I won’t claim to be an expert; I’m learning every day. I don’t think that everyone has to know everything about every single condition out there, but I do think that everyone could benefit from increased education about and exposure to disability and chronic illness.
A little empathy and understanding go a long way. For able-bodied people, there is a wealth of resources available; there’s the internet, local organizations, and disabled people literally everywhere. If you notice a gap in your own education, please work to fill it. If you have children, please work to normalize things like mobility aids early so that they don’t grow up to become the type of person to glare at a teenager with a walker or try to “help” by pushing someone in a wheelchair when they haven’t been asked.
Charissa Graves is a reporter for The Hutchinson Tribune. She can be reached at charissa@hutchtribune.com.