Illustration by Mark Weber

Imagine keeping a medical secret from every person you’ve been with and loved — an elaborate lie that kept you from being fully vulnerable and intimate with someone. That was my reality for more than half my life. Until last summer, when at 33, I finally let my guard down and told a significant other about my colostomy for the first time.

Since I was paralyzed in a car accident at the age of 5, I’ve lived a normal life. I went to college, traveled the country, and have built amazing friendships. Like any disability, mine has provided challenges at every step (even as I write this, I’m about to head into a doctor appointment).

For all the frustrations my wheelchair causes, it has never been difficult to explain my relationship to it when dealing with boyfriends and potential lovers. In fact, it’s somewhat easy and often needs no explanation at all: I use a wheelchair. It gets me from point A to point B. If I don’t have it for any amount of time, I’m screwed. We’re a package deal.

But perhaps the most frustrating part of my disability is explaining what’s not readily visible. No one prepares you for explaining a colostomy bag and all that comes along with it. How do you explain to the person you’re dating that you shit in a bag? There’s no easy way to do it.
So I kept this part of my disability a secret from every man I’ve dated since the age of 16. As you can imagine, this has the potential to get quite awkward in the bedroom. How the hell do you hide something like that?

In the beginning, it was easy. When I had my first boyfriend at 16, I had no interest in sex. All I had to do was keep my pants on, and he was none the wiser. For three years, I never spent the night with him, changed in front of him, or let anything get close to sex. Needless to say, it was three years of things in the bedroom being “about him” and keeping him at arm’s length, physically and emotionally.

But being a person who does have a need for intimacy and sex, I figured out that just practicing abstinence was not a realistic solution. And in fact, the first time I was ever in love, at age 21, the issue was undeniable. For the year and a half we were together, I was never fully naked with him, got undressed strategically and frequently feigned having a stomach ache or said I had a bruise and couldn’t be touched on my stomach.

I was so in love, and yet so afraid that if he knew the truth, it would be the end of us. But hiding it brought about what I most feared. When we broke up, he said I wasn’t truly available and never let him in. I tried to fight for us, and tell him I would do whatever I needed to in order for us to work. But at that point, with over a year of lying to him, I knew it was already over.

The Struggle

You’d think I would have learned my lesson at that point, but I was still another 11 years from even coming close. Initially I thought I just needed to be cleverer in my deception. I found pieces of lingerie that would cover the exact right spot, or I would strategically place sheets covering that 3-inch part of my stomach. I refused to ever shower with a boyfriend, often just saying that I wanted my privacy and had no desire for him to come in with me (both lies). I even dated someone for a while who had a colostomy himself and when he told me about it, I said, “that’s cool, thanks for letting me know.” I couldn’t tell him that I had one too, and that I was tortured with guilt for not affording him the same honesty that he gave me.

I had built up this idea that the moment a guy found out about my colostomy, he would no longer find me sexy. Keeping it a secret allowed me to be in denial. In those moments, it felt like maybe I could pretend it wasn’t there, and that I was just like any other woman they would be with. There was safety in that. But knowing I was lying to people I loved and never truly becoming intimate with them kept me up at night. I would think about what would happen when he found out. What would he say? How much would my existence gross him out?

Something finally clicked when one of my best friends addressed it with me for probably the 50th time. She told me I was making too big of a deal out of the whole thing, and anyone who loves me will love ALL of me, parts that are less sexy and all. She pointed out that, “if he can’t handle this, which is so small, what will he be able to handle?” She also recommended that I tell future suitors early on, so I know if they are worth my time. I thought she was out of her mind, but that it couldn’t hurt to try. This invisible wall had been up for too long.

When I started dating a music teacher over the summer, I knew within the first hour of the first date, that this would be the guy I told. Let’s call him Ben. I liked Ben instantly, but not so much that I’d be heartbroken if he wasn’t cool with it and bailed. He made me instantly feel more at ease than any other person I have come into contact with. I had a grand plan. I was going to tell him after about a month of dating, and I was going to do it head-on in a calm, collected way.

My plans were quickly thwarted. This guy was more perceptive, passionate and inquisitive than anyone I’d ever dated. I had to come clean. Fast. He had no problem asking pressing questions early on. He’d look at me and say, “why won’t you just take off your shirt?” And, “is there something wrong with your stomach?” For whatever reason, I couldn’t stand the thought of lying to him — I wanted this to be different.

On date two, after way too much wine before he arrived, I got up the nerve and told him about my “medical device on my stomach.” I explained it as simply as I would explain the wheelchair. I wasn’t sure how much I should divulge, because part of me wanted to ease any potential fears about cleanliness. But I didn’t have to. To my surprise and relief, he was receptive and cool with it. He likened it to an insulin pump, and asked to see it, to which I told him no. Although the colostomy didn’t seem to faze him, he also didn’t portray any empathy for my situation. Telling him was a big step for me, but I wasn’t ready to make that extra leap of faith of showing it to a guy I barely knew. Which was funny, because in some ways he already knew me better than any guy I had dated previously. That scared the crap — pun intended — out of both of us.

What Doesn’t Kill You …

I’ll skip the sordid details of what followed, but Ben and I did not last. While I had spent so long worrying about this one thing, convinced that I would immediately be rejected upon discovery, I never prepared for how I would feel afterwards. I was so worried about other people’s perceptions, I forgot about myself.

For the first time in my life, I was completely vulnerable and honest with someone. It was terrifying for me, and I did not handle it well. I felt naked for the first time of my life and convinced myself that it was still going to go sour. Instead of being honest about the nerves I had in that moment, I did everything I could to push him away. I was critical, unfair, and became needy and overly insecure. Now, months later, I am still incredibly embarrassed about just how unprepared I was and how poorly I handled it all. I made something fun and carefree become overly serious because in my mind, him knowing meant that things were suddenly different. And that wasn’t entirely true.

Ultimately, this whole journey was one of learning to be honest with myself, and finding out that I could be cared for and accepted regardless of the situation. I’m so glad that I was honest about who I am and what I have. I don’t know how the next man I tell will react, but I have learned how to handle what happens next in a positive, meaningful way. The confidence that has followed is palpable. I feel more comfortable with myself and the device than I ever have before, and this changes my approach to dating moving forward.

Yes, I have a colostomy bag. I’ve kind of stopped giving a damn, and it’s the most freeing feeling in the world.