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What I Wish My Parents Understood About My Life With Chronic Illness

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Dear Mom and Dad,

I’d like to think the scariest thing in the world will always be the boogeyman under the bed. But eventually I grew out of that, and I found the scariest thing in the world is the unpredictability of my health. Why is the unknown always so scary? There’s something about not knowing if tomorrow will finally be the straw that breaks the camel’s back.

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In your eyes, I will always be the healthy 10-year-old running amok in the cold, autumn woods behind our New York home. But I outgrew my adventurous side and traded it in for trips to the emergency room and to doctors to get different opinions to solidify my disabilities. I became this boulder that couldn’t move. Although some may find that an amazing feat, you and I both know I went from a rolling rock to this still and uninteresting boulder.

In a perfect world, I wish you saw the pain I experience every day. Not everything manifests itself externally, so although you did see me taking my medication, you didn’t see the late nights crying. The long walks slowly through Walmart that took hours on end just to get a gallon of milk. You didn’t see the winces and groans of my insides crying out in pain. But most of all, you didn’t get to see the hands of nurses I’ve held on wars I’ve waged against myself. See, I went from this perfect 10-year-old, to this not so perfect 19-year-old in and out of jobs like a bride shopping for her wedding dress.

My health will never be the same. These conditions are my angels and demons I will have to live with for the rest of my life. I can’t help but wish to apologize for the pain I’ve put you through, but I remind myself it’s not my fault these things are happening. In a perfect world I would love to have a fulfilling career, a big house and no real health problems.

However, if that wish came true I wouldn’t have met some of the best people who are active in my life now. I wouldn’t have my amazing service dog, Godric. I wouldn’t have learned so much about others with my condition. I wouldn’t have been able to advocate for people such as myself who deserve more recognition with our disabilities.

I wish you understood the pain caused by my conditions.

I wish you were here for the countless procedures and surgeries I’ve had this month alone.

I wish you’d lend your honest ear for the nights I cannot sleep.

But most of all, I long for the winds of your love to guide me back to the shore, back to your heart.

Not So Perfect Anymore

Getty image by _LeS_

Originally published: November 12, 2019
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