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The Phrase I Get Tired of Hearing About My Chronic Illness

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“That sucks, but it could definitely be worse.”

Living with a chronic illness my entire life has forced me to hear that phrase over and over again. Other variations are:

“Wow that sounds really painful, but at least it comes in waves.”

“At least it isn’t cancer.”

“Well, when you’re feeling better you’ll see it really isn’t that bad.”

Those words hurt, but most of the time, people saying these phrases are not ill intentioned, they are just uninformed.

The first time I can remember having an abdominal migraine attack was when I was 5 at a restaurant with my family. The intense nausea and stomach pain became something I just had to learn to deal with. When you’re a little kid, people tend to go easier on you. But when you’re an adult, people generally think you are being dramatic.

Abdominal migraines typically occur in children and the child outgrows the condition. For me, my abdominal migraines have stayed with me into adulthood.

An abdominal migraine is sudden onset nausea with intense stomach pain that comes in waves. When the waves are over, I return to be a functioning adult without any debilitating symptoms.

Having abdominal migraines, as an adult, are so rare that is has taken me decades to even receive a diagnosis. My family and I have gone through doctors, diets, and different medication combinations to find nothing that has stopped my attacks. I have endured a battle of gastrointestinal tests, endoscopies, and medicines that have left me in a constant haze.

I’ve learned to how to cope with my attacks by taking medicine to counteract the nausea, but I will never be “cured” from my abdominal migraines. I’ve also learned how challenging it is to learn that I will forever be sick.

When I first received my diagnosis I felt demotivated. It wasn’t fair to be given a condition that isn’t “fixable.” It’s hard to get up everyday knowing that you’re probably going to get nauseated when the rest of world is not.

So, when I hear people quip that, “it could be worse,” it negates the battle I have gone through to even learn how to survive my everyday life.

Throughout my journey of learning about my condition, I have learned about myself. I’ve had to get rid of friendships, avoid family that doesn’t support my needs, and create a work-life balance that is attainable with my illness.

If you know someone with a chronic illness and you want to offer support, here is what you could say:

“Let’s do something fun when you’re feeling up to it!”

“It really sucks that you have to live through that. It must not be easy.”

“If you ever need to talk about living with your chronic illness, I’ll be there to listen.”

Even though I can’t fix my abdominal migraines, I am proud to say that I have created the life I want to live with the people I need by my side.

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Originally published: April 23, 2017
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