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What I Wish Others Could 'See' About My Invisible, Rare Illness

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In my picture, I may “look” happy. I don’t look like I am in pain every day, but I am.

I don’t look like I battle with low mood, anxiety, low self-esteem, and depression because of my rare disease, eosinophilic gastroenteritis. What it has done to me physically, mentally, and emotionally isn’t visible.

It’s important to not judge a book by its cover.

You never know the invisible battle someone else may be facing.

Because eosinophilic gastroenteritis is rare, it is extremely hard to treat. Symptoms can include nausea and swelling of the abdomen, which can be embarrassing as people can think I look pregnant, when I’m actually very sick. My weight is constantly up and down.

It can be tiring, but I try to remain positive as much as possible. This is difficult when you’re constantly in and out of the hospital. Even right now, I’m awaiting a bladder operation.

Like many people living with a rare disease, I also struggle with side effects from medications I take, including a chemotherapy tablet that helps manage the symptoms of my illness.

I wish the world could see that it takes a lot of strength, determination, and willpower to get up out of bed and try to live a normal life when you experience the physical, mental, and emotional pain of living with a rare disease.

It’s not easy, but I do it.

So please, remember there are others out there are fighting invisible battles, and things aren’t always what they seem.

Originally published: June 30, 2018
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