Being in a wedding party is a difficult time when you’re diagnosed young with inflammatory bowel disease (IBD). While it is an honor to be asked to participate, for me, it came with the challenges of being fitted for a dress while living with severe ulcerative colitis.

When I was in my early 20s, like many women, I was a frequent bridesmaid. In some cases, this meant being fitted for a dress that was picked out by the bride. All the women in the wedding party would order the same dress, in the proper size, and have it altered, if necessary.

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Content warning: This post contains a discussion of body size, weight, weight loss and gain, and judgement.

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Being away at college also meant that I was usually not readily available for dress fittings for high school friends who were getting married in a different part of the state. Instead of showing up to be measured by a seamstress or trying on dresses, one would forward one’s measurements to the bridal shop. That way they could work out what size dress to order, and plan for making the alterations.

This is not usually a pleasant process that boosts one’s self esteem.

Not Being Believed (Again)

On one memorable occasion, I sent my measurements ahead to the bridal shop. For whatever reason, I was then available to come and try on some dresses in person before they were ordered for the wedding party.

At the time I was around a dress size 4. While at the bridal shop, I was measured several times. By different people. Over and over. They kept measuring my waist.

They didn’t believe the measurements I sent in. And then they didn’t believe it when they measured it in person. There I was, bare waisted, getting measured repeatedly by strangers.

My abdomen was distended. It was always distended, no matter how thin I was (and I was frequently losing too much weight in those days before surgery). It didn’t make sense with the rest of my measurements. I didn’t understand this, nor could I explain it. I knew so little about ulcerative colitis at the time.

There Is Always a New Way to Be Humiliated

It was embarrassing, that day in the bridal shop, but it was the same even when shopping for everyday clothes. Nothing ever fit right. I didn’t understand it because it was that way since I was diagnosed as a teen. I relied on leggings, even though I was so thin that people would regularly comment on my size: sometimes with praise, sometimes with envy, and every so often, with true worry.

Now I know: I had a distended abdomen. It was due to a swollen, inflamed colon as well as run of the mill bloating from not digesting properly. I was never going to be the size that I “should” be. This continued even after j-pouch surgery, which added a midline scar and lumps and bumps from the scars left by a stoma and drains.

When it came time for my own wedding dress: I was 6 months out of surgery and so I opted for a style that laced up the back. A simple fix for a complicated problem.

IBD Affects the Whole Person

We talk so often about how IBD affects certain aspects of our lives, such as bathroom access, fatigue, or the need for medications and frequent doctor’s appointments. But it goes beyond these things and creeps into the cracks and crevices of our lives in so many insidious ways. 

It leaves invisible marks on our hearts and our minds. We know these dents — these cuts, these lines — are present because we felt them as they were made. They seared us with physical and emotional pain. 

But nobody around us can see these marks. They don’t know that when they make a seemingly innocuous comment about size, or weight, or muscle tone, that it is forcing that unseen wound open again. The damage is invisible to them but it goes so very deep into our minds and our bodies.

In recent years, there’s more recognition of the harms in judging a person’s physical characteristics. On the other, we have social media that elevates and promotes bodies with certain characteristics (namely whiter and thinner ones).

That still leaves those of us with invisible illnesses occupying a liminal space. Being either made of too much clay, or too little, to fit the mold that society wants to pour us into. Yet still expected to come out of the kiln feeling as solid, and looking as blemish free, as the other humans around us.

As Always: Communication is Key

Does all this mean you shouldn’t ask your friend who lives with Crohn’s disease or ulcerative colitis (or other condition) to be in your wedding? Of course not. People who live with illness and disability deserve to have the same experiences as everyone else.

But it is worth remembering that asking your friend who lives with an illness, even if they’re young, about how they’re different from your other friends and family, and how you can help. It will always be appreciated.