What I Wish I Could Tell Myself When I Was Diagnosed With Interstitial Cystitis


You’re sitting alone in the urologists office waiting for your test results. You are there alone, wearing your purple cardigan, black striped dress, leggings and favorite black flats. The ones with the bows. You aren’t nervous, in fact you are preoccupied with what you’re going to order at Starbucks later. You fully expect the diagnosis to be yet another UTI.

It isn’t a UTI. It isn’t good news. You are about to have one of the toughest conversations of your life.

From five years on the other side of that conversation, this is what I wish I could tell you:

Your idea of personal space is going to change really quickly.

You have always been a more modest, private person. Having to pee in a cup to test for a UTI makes you blush. Oh sweet girl, that is nothing compared to what is to come. After a few years more people will have seen you from the waist down than you can count. Your mother is going to have to pick your naked self up off the floor and rush to the hospital after you collapsed in the shower. Nurses will assist you in the bathroom. You will learn to use a catheter. It sounds horrifying, but I promise, after a while it all becomes very normal. Nothing is taboo. Nothing is embarrassing. And all these people that see you, I mean really see you, are just there to help you, not judge you.

This journey is going to be sprinkled with the most glorious cast of characters.

You will find camaraderie with medical professionals, fellow patients, waiting room neighbors, and everyone in between.You are going to share some hilarious, candid, heartwarming, and inspiring moments with them. You will be reminded of the good in people and the perseverance of the human spirit. You will find joy in these relationships, and in the retelling of these stories.

Your weight is going to fluctuate. A lot.

I know you have worked so hard this past year to establish a healthy lifestyle. You have done a great job, and it shows. But don’t get too attached to it. Your muscles are going to go soft. You will lose tone. The numbers on the scale will go up. Sometimes it will be nothing more than interstitial cystitis (IC) belly or endo bloat. But it will also be because it will take everything you have to get up and go to work. Daily workouts will become a thing of the past. Your diet, at times, will consist solely of applesauce, plain rice, and simple carbs. It isn’t healthy, but it is all your body will tolerate.

However, there will be times when the numbers on the scale go down too. Surgery, habitual nausea, and exhaustion will steal your desire to eat. This sort of “weight loss” will not give you any satisfaction.

Regardless of any of this, I beg you to remember: the number on the scale, whatever it may be, is not a measure of your value.

You will miss out on seeing Taylor Swift.

For Christmas in a few years you will get floor seats to the 1989 World Tour. Queen Tay. Live. In concert. At Ford Field. You will hardly be able to handle the anticipation!

But two days before the concert, you will tearfully agree with your husband that you have to sell the tickets. Your surgery 10 days beforehand will end up being much more complicated than you could’ve anticipated. You can barely stand, let alone attend a concert. You aren’t used to missing out. This lost opportunity, and every lost opportunity, are going to be difficult to shake off.

You aren’t going to miss tequila and Pizza Hut as much as you think you are.

IC hates certain foods. Some of these foods are things you really, really love, like margaritas and pizza. At first, losing these things is going to make you angry. But this anger will pass. You will realize that although you love these things, they really aren’t worth how awful they make you feel. Your new limitations will take some getting used to, but you will manage.

This will break your heart, but it won’t break your spirit.

You will have bad days. You will experience moments of pure, unadulterated defeat. But you will also have good days, days where you almost forget you are sick at all. You will learn to appreciate the good and handle the bad with the help of your faith, your family, and your friends (and, let’s be serious, your doctor – the Michael Jordan of urogynecology. You haven’t met her yet, but trust me, she is fabulous, and you will thank God every day for her). Being sick is a part of you, but it does not define you.

Now come on you scrappy little fighter, you’ve totally got this.

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Thinkstock photo by artant


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