Growing up I was always in pain, it was a constant undercurrent in my life. But I was told by well-meaning doctors that it was simply growing pains and there was nothing I could do about it. I figured everyone else was suffering as much as I was during gym class, where the things that I was semi-good at were low contact, low impact activities, and always blew everyone away with my flexibility testing. Sports just wasn’t my thing so I just focused on getting good grades, at the time I had undiagnosed ADHD (a common comorbidity with Ehlers-Danlos syndrome (EDS)) so I would have to just reteach myself everything from my notes every night.Meanwhile, I was suffering from back and hip pain from my backpack, an issue none of my other classmates complained about. I had terrible fatigue, falling asleep during class and after school every day, which was just associated with me being a teen. Fast forward to my college days, continuing to struggle with constant pain, fatigue, still undiagnosed ADHD, and then getting into my first car accident but my second concussion. Everyone else in the vehicle was able to walk away mostly unharmed, my concussion had me completely in the dark for a few weeks and homebound for six months.Thankfully, my professors allowed me to skip my semester and retain a spot in the respiratory program when it was clear that there was no way I could complete the curriculum. There were many nights where I would cry all night because of the pain from my whiplash and my head was just pounding. My amazing mother did a ton of research on food that would help in my recovery and made sure I made it to my many doctor’s appointments since I wasn’t cleared to drive for a while. If I didn’t take care of this the best I could, it could ruin my future hopes of becoming a Respiratory Therapist and living the life I was working towards. This was my first real lesson in prioritizing my health.I was able to return to my program the following semester, and though not without its challenges, I graduated and began working as a Registered Respiratory Therapist. Through this, I was able to travel, spend time with friends, go to the gym, and reach my personal goals. I was loving and living my best life. But something wasn’t right. I couldn’t recover from a workout the same way my friends did, I tossed and turned all night for hours, and when I woke up, I never felt rested. I was known as the girl who was always tired and absolutely needed her 2 pm nap.
The days I worked my twelve-hour shifts, no matter how much I spent on good shoes, stayed hydrated, and scheduled regular massages, I would limp when I got home, have burning joint pain, and always be told that my muscles were tense, and dehydrated. I thought, everyone else at work must be feeling this too and needed the two days of recovery like I did.You know when I realized something was wrong? When I got a wonderful contract job in the middle of nowhere. No ventilator patients, no running around, and no 15-minute lunch breaks interrupted by a code blue. Still 12 hours, but it’s the absolute best 12-hour shift a person could ask for. Yet, I still felt like my body was on fire and I could barely stand when I got home. This was not normal, and there was no way anyone else felt this way 24/7, so I had to quit being a Respiratory Therapist. My body was screaming at me, and I needed to listen.The actual journey to get proper care and a diagnosis is a 4-year story in itself, but I share this to say that if I had listened to my body’s signals sooner, I don’t think it would’ve been as difficult as it was. I spent over a year bedridden because I had spent so long just thinking I was weak, lazy, or simply complaining. I have classical EDS, inattentive ADHD, hyperthyroidism, sinus tachycardia, insomnia, and other health-related issues. I looked “normal,” but that’s not how I felt, and my quality of life, pushing through that much pain just to live my life was not okay.I quit my career in Respiratory, but I gained a life I’ve never had before. I have more low pain days than ever, I was always at an 8 before, like I, for real, do not understand how I did that. It says a lot about the human ability to survive, which a lot of us do. And if you’re living with EDS like me, being able to thrive looks completely different than what you might think, but it is possible.Bethsy Rosales is a mixed media artist with Ehlers-Danlos syndrome based in Kansas City, Kansas who creates work exploring nature, invisible illness, culture, and the peace and hope found through art. Connect with her directly on Instagram @lilhaitianinthemidwest
