Updated: Feb 18, 2019
Today marks 12 years since I was diagnosed with Ehlers-Danlos Syndrome (EDS). 12 years! What?! How?!
They can take that day and shove it up their ass. At the time, I had absolutely no idea what 12 years later would look like. I didn’t know EDS would take away school sports. I didn’t know EDS would alienate me from my peers. I didn’t know EDS would take away a degree in nursing. I didn’t know EDS would take away my ability to carry children. I didn’t know EDS would make friends and family doubt me. I didn’t know EDS would push away friends. I didn’t know EDS would cause so many of my organ systems to fail me. I didn’t know EDS would cause me to be jobless. I didn’t know EDS would come at me throwing punches trying to knock me down. I didn’t know…
When I look at the above list, it’s daunting, scary, raw and very real. At this point i’m sure you are shocked. You are probably feeling empathy for me and my life. (I get it, it’s human nature; just don’t pity me. PLEASE, never ever pity me!) You probably don’t know what to say. I probably made you uncomfortable. You may be straightening your brow with your finger, rubbing you eyes, sighing or adjusting yourself in your seat. You are probably thankful I didn’t unload all of this on you in person out of fear of how to respond. I get it, I feel those things too.
But what I want you to know is even though all of those things are complete shit, my life is not. As you do when you add a child to your flock, life changes. All we can do is make adjustments and do the best we can. That’s it. We all do it. Every. Single. One Of Us. Even though our lives lead us down different paths, we all find strength to get through it. The things on that list didn’t happen overnight. They happened over a span of 12 years.
Trust me, you could do it to if you had to.
“What doesn’t kill you makes you stronger, stand a little taller.” -Thanks, Kelly Clarkson
EDS has given me more than it will ever take. EDS has given me friends. EDS has given me a support system. EDS has given me the most incredible physical therapist who never gave up on me. EDS has given me a massage therapist, Megan, who is much more than her title. EDS has given me the chance to sit with some of the best doctors and learn about disease. EDS has taught me courage and strength. EDS has taught me to be an advocate for myself and others. EDS has taught me to be comfortable with who I am. EDS has taught me that I am worthy of all the things that bring me joy. EDS has taught me what unconditional love is. EDS has taught me to be flexible and roll with the punches. EDS has taught me empathy. EDS had taught me to take one day at a time. EDS has taught me to see the good in every moment. EDS has given me a story.
I like to say, “EDS DEFINES ME!” YES, it defines me! I said it. Somebody actually said it. Everybody can pick up their jaws from the floor now. For some reason we are taught to not let our disability/illness define us? Why? Why the heck not? EDS is THE BIGGEST part of me. My life revolves around my illness. I’m proud of it because the only reason I am me is because of EDS. I am proud of me. If EDS didn’t exist in my life, my story would be different. I would have taken an alternate route. I probably would have graduated with a nursing degree and headed for the beach to live on my own. I wouldn’t have my family close and I wouldn’t have met my husband (& don’t tell him, but I kind’ve like him). I'M HAPPY WITH MY LIFE. I'M HAPPY WITH ME.
It’s okay to be defined by your disability. You shouldn’t have to ignore that it exists just so people around you are more comfortable. But don’t forget all the other things that define you too. I am also a wife, a daughter and a sister. I am a great friend, a cat-mom, a niece and a granddaughter. I am an artist, a music & concert lover and Tim & Faith’s biggest fan. I am a taco & ice cream connoisseur and I really like carbs (pasta please!). I am a lover of the beach, Puerto Vallarta, anything coconut (including the trees they come from) and 77 degree weather. I am disabled.
“I am me and that is my superpower.”
Remember, "Count your Rainbows, not your Thunderstorms!"