This is Not a Gift Guide

This Is Not A Gift Guide: An IBD Community Poll

At the end of the year, we see the gift guides come out. There’s one for every type of person, usually focused on age and gender, but also based on hobbies or interests. Or, even, based on chronic illness such as inflammatory bowel disease (IBD).

There’s no doubt, gift guides are helpful. For someone like me, who doesn’t go out shopping a lot, it’s useful to know what’s out there. Learning about the latest in cookware or video games can be helpful. To me, the funniest ones are the gift guides for teens or college students. Even I know they just want cash.

Gift Guides for People With IBD

You’ve likely seen gift guides for people who live with Crohn’s disease or ulcerative colitis. I may have written some of these guides over the years (more than a few, in fact). From a content perspective, they’re a nightmare, because they take a lot of time and need to be updated frequently.

From a practical standpoint, they’re difficult to write. IBD can affect anyone, so how is it possible to create a gift guide for everyone who lives with an IBD? Well, it’s not possible. People with IBD are not a monolith, of course. They’re people.

Maybe Just Ask

I never really deeply considered whether people with IBD actually want things given to them that are related to their disease. After seeing some of the suggested gifts this year, I began to wonder if this was something that really resonated with the community. I thought I’d try to find out if people really did want gifts focused on health or wellness.

I posed a question on both Twitter and Instagram. Phrasing poll questions and answers is difficult. They need to be written in a way that doesn’t skew the results. Administering surveys and polls so they’re as accurate as possible is an entire science. When you want a well-done poll or survey, you usually hire people who specialize in creating them.

Well, I’m just me, so I phrased the question as best I could with character limits and limited attention taken into account. Here’s how I wrote it:

“Do you want to receive IBD-related gifts (such as toilet accessories or bathroom-related items) at holidays?”

•It’s complicated (reply)

The Results

My question doesn’t capture every gift possible. IBD affects the entire person; it’s not just about the toilet. However, the need to use the bathroom urgently or too often is maybe the problem that’s the most common. For that reason, many gift guides seem to focus on things one can use in the bathroom.

Consider, for instance, something like a heating pad. Doesn’t have anything to do with the bathroom, at its core. As a matter of fact, I may be using a heating pad as I write this from my office. That’s something that might not be a terrible gift. So, this survey doesn’t necessarily capture all aspects of IBD or even chronic illness. What I wanted to understand was more targeted to specifically the bathroom.

Here’s what people answered in my poll:

•Yes: 36%
•Maybe: 14%
•No: 50%
•It’s Complicated: 0%

•Yes: 17%
•Maybe: 11%
•No: 60%
•It’s Complicated: 12%

The “it’s complicated” answers gave some context.

A: “It’s the thought that counts. If I knew that it was given as a gift that was coming from a well-meaning person, then that is one thing. If it was meant as a put down, then absolutely not!”

A: “If it was from close friends & family, I’d be okay with it. But that’s a hard pass from anyone that doesn’t know enough about what’s going on.”

A: “If my husband or kids gave me something as a joke that would be ok.”

The Limitations

This survey had some major limitations. First, it only reached as far as the About IBD social media channels. This is more expansive on Twitter than it is on Instagram, but it is still only going as far as the people who may be following me or people I’m connected with or who reTweeted the poll.

Second, only a small percentage of people who saw the poll interacted with it. On Instagram, “viewers” may not even represent people who actually saw the question. You can go to Instagram stories and not actually watch any of them. They just so happen to be displaying on your screen. (Whoops: is that a secret?)

Third, the nature of these polls is self-selecting. People who don’t care or have no opinion probably aren’t going to answer at all. People who have strong feelings, which in this poll, is likely to be “no,” are more likely to answer the poll. Taking these things into account, it could be that the “no’s” are overrepresented.

Take Aways

However, the limitations might work to also prove my take away, which is that it’s probably best not to give a person with IBD something that goes in their bathroom.

My reasoning is something like this: you could give a person with IBD some bathroom scent spray. They might like it, or at least not be offended by it, and you’ve given a passable gift. But it’s not something they’re going to remember fondly: it’s not that kind of gift.

However, you could give someone with IBD bathroom spray and they will be hurt, offended, angry, embarrassed, or some combination of those things. In that case, the gift has caused ill feelings. They might not ever tell you how they feel about it. But you might be on the receiving end of those feelings anyway. Was giving the bathroom spray worth it?

Here’s my point: When you think about it this way, maybe don’t give the bathroom spray unless you absolutely know it’s a great gift.

People Are People

Besides being a killer Depeche Mode song, “people are people” is a good turn of phrase to consider here. In medical writing, we use something called “people first language.” There’s arguments for and against it, but it’s what I most often use in my writing. “People” with IBD, is how it’s phrased. Or “People Living With” IBD. The word “people” comes first.

Because we’re people. People living with IBD are as varied as any other group that one can imagine. Some of us are in remission and don’t engage with the community, which is great. Some of us are really sick, and we’re intimately connected to others living with these diseases. Some of us go between these spaces. And some of us don’t think much about our disease from day to day at all.

All of these states are valid. All of these people are still “living with IBD,” and I fervently hope, thriving despite it all. My personal advice — which I don’t often give — is that if you don’t live with IBD, that you should treat your friend or loved one who is living with it like a person, not a diagnosis.

And to take it one step further: if you ever give me, Amber, something that’s for use in the bathroom, even as a joke, I will say “Thank You,” and act like everything is fine. I’ve had IBD for over 30 years, so I’m a passable actress. But you probably won’t be getting a holiday card from me next year.

Happy Holidays from The Tresca Family

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