The Story

I have been called strong, I have been called inspiring. I have been called crazy, I have been called a fake. I have been told I am the example of “everything [they] want to be”, while having whispers of being yet another in a line of hopeless hypochondriacs. They’ve called me resilient, relentless, and ridiculous. You can call me Sounally. I have, but am not defined by, EDS. This is my story.

We are never really victim to our situations, just our mindset.

For as long as I can remember, I have struggled with my health. I have always been the “sick kid” that would always be absent from school. The days of the mile run during fitness testing week in PE were the most dreaded two days of the school year. I couldn’t understand how all my friends would play sports on their teams every day on purpose, and even stranger to me was they actually enjoyed it! Why would anyone go running on purpose? They’d talk about “runner’s high”, and I figured it must be one heck of a euphoria to combat the misery of running. When my little sister ran 5Ks, I was so exhausted just moving from the starting line to the finish line, and it was only across the field. I figured I just fit into the stereotypical profile of the prissy, overprotected, non-athletic Asian nerd girl. Sure, I was book smart and dressy, but pretty clothes shouldn’t make you face passing out when you’re walking. I just couldn’t figure any other reason why, since nothing made sense.

Six years after beginning a vigorous search for an answer, we found out I have Ehlers-Danlos Syndrome, a genetic disorder involving connective tissue that can result in pain and stomach paralysis, among other things. In seventh grade, my stomach was paralyzed for six months, with the only reason we could find was being triggered by Mono and going terribly wrong (little did we know!). Then the back pain, the nerve pain, the headaches. They were all “invisible” symptoms that no one can see. Because they couldn’t see what was wrong, and I was a skinny teenage girl, I was dismissed as depressed and treated as crazy (but not diagnosed as crazy, because that’s a whole other fight). They put me on antidepressants my junior year which ironically, caused serious depression. I didn’t know what was happening, but I became a shell of human wearing a mask and trying to react to things the way I knew I should feel and react to.

Depression is real. Anxiety is real. I’ve had depression to the point of suicide, and anxiety to the point of convulsions on the floor in a ball. The thing is, while it was terrible in the moment, I was never angry for having to go through that. I am so grateful for those experiences. This has became a common theme in my life- gratitude- and I hope to share this as I share my story. So why would anyone be grateful for those terrible experiences? Because I was able to understand depression firsthand, and the pains and reality of crippling anxiety. This personal understanding gave me the perspective I wouldn’t have had naturally, but it helped me to understand enough to listen and save a life more than once. That, in itself, was worth it enough to go through it over and over again.

We will define ourselves by the lives we live.

Following those experiences, we got a (mis)diagnosis of AMPS (Amplified Musculoskeletal Pain Syndrome) which led us to go to NJ for a doctor's appointment, and we were welcomed into the Ronald McDonald house. I’m not saying you should eat a ton of their food, but I do stand by the fact that donating to this amazing charity is worth every penny. It was the most incredible place that does so much for the families on a personal level (Gratitude #2!). I went through high school having to drop classes on doctors' orders, and go throughout the day to day just struggling to keep busy to distract from the pain that never went away. In college, I ended up having to swallow my pride- another huge lesson I hope to share- and talk with student disability. I made it through my first semester to come home and spend New Year’s Eve in the ER. THIS IS WHERE IT ENDS AND BEGINS!

Hearing the doctors countdown the new year in the ER was so pathetic, my mom and I had to laugh about it a little. I had a complete breakdown a few hours before, feeling the pain coming back in full vengeance. We made it to the ER an hour before our $7,000 health insurance deductible reset. They sent me home with some pain meds that didn’t work. Our kind, amazing family doctor prescribed the most pain medicine he could to try and help, but it didn’t work. We went to a pain specialist who prescribed narcotics that were used for people who abused narcotics and have a tolerance to them for surgery that’s supposed to knock them out, and they are usually only available in a hospital. They didn’t even make me drowsy. But, within ten minutes of our first appointment, he gave the diagnosis that would change my life forever.

He asked how flexible I was, which I could play the piano backward with my feet behind my head. With the other symptoms, he said, “You have Ehlers-Danlos Syndrome”. Upon learning more about my diagnosis, all the random symptoms I didn’t even think were related or even symptoms explain what my mom, sister, maternal grandmother and I have gone through that so many people thought was completely hypochondriacal. It’s a genetic disorder that displays in simple signs as long limbs and fingers (which is why I can’t ever find knee-length skirts and why on my 3rd day of life, in a home video, my Mom said “You have such long fingers! You’re gonna play piano”), clumsiness from misestimation of body location, and "luxuriously SOFT skin". Random, right? Yeah, I thought so, too. I am now on the two-year waiting list for the Ehlers-Danlos clinic for an official diagnosis and symptom treatment.

So that’s my story so far. God’s given me a storyline that I am trying to play out, and I hope to share what I’m learning as I live with a chronic illness. What’s most important is that I am not defined by EDS. How I live with it is how I can write my own definition. We are agents to act and not be acted upon (2 Nephi 2:26), so we will not be defined by anything- we are not dormant objects- we will define ourselves by the lives we live because we write our own life stories. We are given a storyline, but it’s a Choose Your Own Adventure; we get to choose how it plays out. Life is full of inevitable situations, and we get to choose how to react to it. It is our greatest blessing and one of the reasons we live to learn to make our own choices, so we are never really victim to our situations, just our mindset. Stay beautiful!

#EhlersDanlosSyndrome #writeyourstory #staybeautiful #perspective