It’s a tale as old as time, for me….
Since I was born, I have had health challenges; the most concerning being a heart murmur and two holes in my heart.
Not to be dramatic, but I have quite literally grown up going to the doctor. It might be part of the reason that when I was correctly diagnosed with Myotonic Dystrophy, the onslaught of doctor appointments didn’t cause me to have a nervous breakdown. The number of appointments I go to and the specialists I see are still way more than before being diagnosed, but I can’t imagine going from 0 to 100 with something so drastic when your health is beginning.
It also becomes massively different when you switch from pediatric care to being thrown in with ‘everyone else’. You looked around a waiting room and overheard conversations such as retirement, grandchildren, and not knowing what ChatGPT is. Everyone in this room is like seven decades older than you, yet your medical records could probably put theirs to shame. I wish I was being funny.
I’ve been given looks by grandmas and grandpas because there is no way I am seeing a doctor; It used to be something I was self-conscious about but when the sweet old man at the imaging place compliments your sweater you start to think, ‘maybe this is just quality time with a bunch of grandparents that I have never met before in my life”. Yes, I know that doesn’t make it any better.
By the time I was in my early twenties, medical terminology might as well have been my first language. While my friends were filling out college applications, applying for jobs, and figuring out relationships, I was filling out medical forums, hoping I would get accepted for certain tests, and learning about insurance and why they are completely frustrating.
Because my health has been such a huge part of my life, I really do enjoy talking about my disease, the difficult symptoms I face, and bringing awareness to the fact that there’s a whole facet of young adults living with chronic illness.
It’s incredibly lonely and hard to be so young and deal with so much that the majority of twenty-something year olds will never have to deal with. It’s frustrating to not have peers or friends understand our experiences or relate to anything we’re going through.
If you’re like me, you know that while navigating your own health labyrinth, you are also coming to terms with losing the ability to live a normal life as a young adult.
We become conflicted, preparing for the future and also begging our bodies to try to live the age we are. No one in their twenties or thirties should ever have to live with the burden of their future because of their health, having to consider their limitations and listen to their bodies when it comes to making plans, having to constantly advocate for themselves, and dealing with the cynicism from others about what they can’t see.
When you see a young person in the waiting room, don’t be so quick to judge, and maybe offer up a prayer because most likely they are dealing with a lot more than meets the eye and are trying to compensate the best they can for a body that is revolting against them.
