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The 3 Words I'm Tired of Hearing in Response to My Rare Disease

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Juliana smiling in sunglasses

“It’ll get better.” I know they mean well — all of them do, my family, friends, colleagues and even at times doctors. They tend to jump to “it’ll get better” when they see me sad, sick or discouraged. Instead, I wish they’d say “It’s OK.” Just OK. I don’t need it to be better, or to be cured, or be “normal.” I just want to know it’s OK.

I suffer from gastroparesis, among other rare diseases. All my life I’ve known something is “off,” but it was seven years ago that I realized my stomach was giving up on me. It took seven long years to get the right diagnosis, and all along everyone has been waiting for a miracle. Here is the thing though, believing I can get a miracle is tiring and some may even say, delusional. I don’t need a miracle because being alive is one. I need everyone around me to say they are OK, and accept my disease and my reality.

The truth is, I’ve stopped thinking so much about the future and focus on the day-to-day. Whether I’ll get better or not is still uncertain and most likely not happening. I made peace with myself, with my inability to eat, to function like others, to run marathons like I used to, to be strong and athletic, to drink twice as much as everyone at the party. I am now another “me.” But still me. I get up and feel pain, my stomach hurts, my head hurts, my heart races and I get lightheaded. I eat Ensure instead of eggs for breakfast. Yogurt for lunch. Ensure for dinner. I don’t have a tube, but I could, and that’s OK. I am OK.

So why do I need to know it will get better? I may be better at dealing with my disease, but I don’t need to hold hope for a cure or a miracle. All I need is an “It’s OK.” It’s OK to be sad sometimes. It’s OK to cry and get frustrated. It’s OK to stay in bed. It’s OK to not be able to hold food down. It’s OK because I’m OK and at the end of the day I’m better now than I was before, I’m stronger.

The Mighty is asking the following: What’s one commonly held opinion within the community surrounding your disability and/or disease (or a loved one’s) that doesn’t resonate with you? Check out our Submit a Story page for more about our submission guidelines.

Originally published: June 6, 2016
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