It's OK If You Haven't Found Your Voice Yet

It’s OK If You Haven’t Found Your Voice Yet

When I still had my colon, I was at the pharmacy on a regular basis. Like most people with IBD (ulcerative colitis, specifically), I was always taking several medications in an effort to keep the inflammation down. I also usually needed over-the-counter things as well — witch hazel and wipes and antacids.

Once when I was in my mid-twenties, the young man behind the pharmacy counter tried to talk to me about my prescriptions. He then questioned my use of that particular location of the pharmacy.

“You know,” he said to me, “there’s a store in [town that I lived in] that’s closer to you.”

We have slang now to describe what this man was doing to me. He was mansplaining it to me. For some reason he thought he knew better.

I Have IBD — I Know Exactly What I’m Doing

Now, I’m not an idiot. Of course I knew of that store which was literally down the street from me. I had good reasons for using this branch of the pharmacy. It happened to be very close to work and I would run over on my lunch break and pick up my scripts and whatever else I needed.

What this young man didn’t know was that it took all my effort to go to work every day. Stopping off anywhere after work was unthinkable. Usually in the morning, I was timing my commute between bathroom visits, so going to the store before work wasn’t easy, either. For many people with IBD, morning is the worst time, and I was no exception.

In addition, I was buying things in the pharmacy that I felt more comfortable buying out-of-town. There’s nothing like being 25 and buying enemas. Or a sitz bath. And running into someone you know like a neighbor or a colleague of my husband’s (who was then my fiancé).

“Lunch” Is Not For Eating

My last reason for using my lunch break for an errand was so that I didn’t need to be around co-workers for lunch. I spent part of my break in the bathroom. And then I might eat something — or not. I was tired of discussing my diet. I might drink a protein drink in my car. Or I might have something that seemed strange to others, like a hard-boiled egg and and a spoonful of peanut butter. I couldn’t go down to the fast food place and eat with co-workers. Being quite thin already, they would probably make incorrect assumptions about me and my diet and I didn’t need that kind of attention. Even if they made the right connection, I didn’t want that problem either, because I needed my job and my insurance.

All of these things ran through my head as I stood there looking at him. He knew my name. He knew the drugs I was taking. He knew how much they cost. He knew how old I was. He knew where I lived. To him I probably looked thin and “healthy.”

But he had no idea what my life was like. He had no idea why I needed the medication, but a 20-something taking a potent anti-inflammatory medication should be a big clue that there’s a serious problem.

I’m Not Taking Shit Anymore

Now, 20 years later I might take the time to educate him and help him understand that he’d crossed a line. Of course, now I am over 40 and am a mother of two. I’m not going to take his shit.

Instead, the 20-something me just said, “Yes, I know.” And switched to a competing pharmacy down the street.

No one would ever know what I went through unless I told them. No one will ever know what you’re going through until you tell them. Being open about IBD is certainly not easy and comes with significant risks but the more we help others understand, the more we can work to ease stigma and stamp out IBD myths.

Sometimes it feels like shoveling sand. The misinformation proliferates quicker than we can work to dispel it. Even though at times it seems pointless, we must keep shoveling that sand. There’s really no other choice.

This is why people with IBD must keep telling their stories and making their voices heard — to their families, to their doctors, to their community, and in their governments. Don’t ever forget you have a voice — we all do — and our collective voices are finally becoming too loud to ignore.

We absolutely can’t stop now. But if you’re in that place that I was, and you’re unable to find your voice in this moment, that’s OK. It will come one day. In the meantime, I got you, and there’s an entire community of people with IBD working in industry, healthcare, and government to affect positive change for you and for ourselves.

When you’re ready and able to join us, we will welcome you.

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