Tuesday, February 28, 2017

A Rare Disease Is...

Some might think this is over sharing. In many ways, it is, and I think so too. Today is Rare Disease Day though. While having a rare disease is, well... rare, knowing how it impacts the lives of those diagnosed does not have to be. I am sharing because this is my life with Ehlers Danlos Syndrome and Mast Cell Disease.

A rare disease is pain, every second of every day. It is spending 8 months out of one year in the hospital, and having tubes shoved down your throat awake. It is surgery and needles. It is not recognizing yourself between the swelling, side effects, and unwanted medical devices.


A rare disease is getting down to 80 pounds, with doctors voicing their fear that you will fall asleep one night and not wake up the next morning. It is part of you hoping that they are right so you won't have to live like this anymore, while the other part of you wants nothing more than to live without any limitations.


A rare disease is your sparkly prom dress hanging not as a reminder of a high schooler's wildest dreams, but as a momento of the night your illness did not allow you to go. It is celebrating your mom's birthday at an unexpected appointment or Christmas in the emergency room. And the only "turning up" you got to do was turning the big nineteen in a tiny hospital room.


A rare disease is the unimaginable. It is losing your ability to walk. It is not eating a bite of food in over a year. And it is telling yourself that you are okay with these things, when really, you never will accept them. But you have to. Because this is your life, whether you want it to be or not.

A rare disease is also finding the good in the midst of bad. It is living for the less painful moments with waxing and waning health. It is soaring with invincibility in the highs, and cherishing joyful experiences to soften the blow of each low.


A rare disease trusting God to compensate for your weaknesses and having faith in His purpose. It is reveling in the support of loved ones. It is connecting with the best friends you could ask for, with one of the greatest hardships bringing you closer than ever.


A rare disease is laughing with your family during card games in the ICU. It is discovering humor in the dates gone horribly wrong, like when stomach contents from your feeding tube leaked on your boyfriend, and the formula too.


A rare disease is finding yourself. It is discovering new hobbies that make up for the missed hours at the gym and softball games you could not attend. And it is seizing opportunities that would not exist had you been healthy.

Lastly, a rare disease is smiling and loving anyways. Because this is your crazy life, whether you want it to be or not.