Hiding Chronic Illness

"The worst part of living with a chronic illness is knowing the whole world doubts you."

In 2015 I was diagnosed with Irritable Bowel Syndrome, or IBS, after months of agonizingly wondering what was wrong with me. I was 20 years old, attending college, working, and planning a wedding. Life was stressful even as a healthy young woman. As the year went on I started having trouble eating. I would feel blown up, like one of those giant balloons at the Macy's Thanksgiving Day parade that I watched every year with my Nana. Sometimes, I'd spend the night throwing up mourning the delicious food my body would never get to digest. Some weeks I wouldn't be able to eat a single thing without worrying I'd pop, simply explode on the spot.

After countless doctor's appointments, MRIs, and blood tests, one doctor finally ventured a guess at what ailed me. "IBS" they said. At first, I was relieved, finally we know what's wrong with me, right? I soon found out that a diagnosis isn't always the miraculous thing I thought it would be. This diagnosis came with no permanent fix, no answer to the "why", and really no hope at all. It's like they stamped me with a big red label on my forehead -

"SICK"

So at least they'd admitted there was, in fact, something wrong with me, that alone was a monumental task. At least they wouldn't look at me with that doubtful face anymore, you know the one, where you can almost hear them call out "Yea right..." as you cry for their help. They gave me a special diet and sent me on my way with a home pharmacy. Suddenly the world became so small.

No dairy. No garlic. No onion. No asparagus, broccoli, cauliflower. Less than a cup of mushrooms, beans, peanuts. No alcohol or sugars.

What was left to eat? Eating out was definitely out the window. Potlucks, BBQs, Friendsgiving, Christmas dinner, suddenly I couldn't participate in any of them. I became that one person who politely declines the impossibly delicious food offered to her. I went to holiday dinners with my boyfriend's family and pretended to eat out of politeness. Other times that messed up desire to minimize my own illness would result in me just eating the food anyway. I couldn't decide what was worse, getting sick off the food, or the way people looked at me.

The worst part of living with a chronic illness is knowing the whole world doubts you.

When you call into work for the 5th time in four months and you know your boss is getting fed up.

When you cancel plans again because you're "not feeling well". If only they knew you were literally trapped on the toilet, sweating, crying, wanting it to be over.

When you go to the ER crying in pain and they peg you as a drug-seeker because all the tests came back normal.

Living with a chronic illness feels like having an unwelcome house guest overstay their welcome. Maybe it's your nightmare-ish mother-in-law, overbearing parents, or that one friend from college who just can't land on their feet, I'm sure we all have that one person whose goodbyes take too long. Now imagine that person shows up at your doorstep demanding a place to stay. You let them in because you're too good-natured. Now, they won't leave. You're making breakfast trying to get ready for work and there they are. At night when you're drifting off to sleep, they sit on your chest and demand attention like an oversized housecat. Every time you try to live your life, there they are in the most inconvenient spot - right in the middle of your gut.

So what can we do? Those of us with hidden illnesses of our own, how can we learn to let those judging eyes reflect back on themselves? Know that I believe you. I know that even getting out of bed in the morning can be an impossible task, yet look at you! Here you are living, breathing, reading this story, you are brilliant! Maybe you're stuck with this awful roommate but you don't have to deal with those doubting eyes. When people doubt you remember that they doubted Galileo too. Your reality is more real than their inability to see it.

For those of you who know someone living with a chronic illness, believe us when we say we're sick. Listen to us and be curious. Get to know what our limitations are and work within them. When you start to see our reality the world doesn't feel so small anymore.