Perception is Said to Be Reality

When Perceiving What Ostomate Life Is Like Doesn’t Have to Be

“You can’t read too much into somebody’s overall health just based on the presence of a bag on their tummy.”

That’s what the quote I read on Instagram said. And it was written by an ostomate who posts with the tag of ru.talks.ibd.

Funny. It was a coincidence that I read this at a time when my wife, Michelle, shared that a friend of hers asked about me. “Is Paul in pain?” the friend said.

I’m not really in pain, but the question implied that either I might be or should be…or, at the very least, I should be dealing with difficult aspects of my seemingly out-of- he ordinary appendage. Sure, I have some discomfort with skin irritations and my stoma sticks out a little farther than the norm to show a tiny bulge on my shirt. But real pain. No. Extreme difficulty. No. So that was the answer to that.

The vibe of being a little left of normal?

But much like in RU’s post, there’s more implied in such questions. If you get to the root of them, actually, there’s the intimation that you might be perceived a certain way. In fact, RU took a mini survey on Insta and asked readers to answer yes or no to the question: Based on the image I am posting, do you feel I’m disabled?

Thirty-seven (37) people said he was, while 70 said he wasn’t. He is strongly of the opinion that he is not.

Like RU, I, too, believe that I am not disabled.  Basically, I am not limited in my activities, and what I eat and how I dress. Overall, at this point I perceive myself as healthy. I’m certainly a. heck of a lot healthier than I ever was in the 10 years prior to my ileostomy surgery.

For some ostomates, the ostomy is not a disabling feature. The underlying medical issue that caused the need for the ostomy might be, though. And for other ostomates, the ostomy may be something that causes them to say they are disabled. In some way, having an ostomy can be considered something that does make you differently abled. I certainly don’t use the restroom the same way I used to. My needs and actions in the restroom are certainly different than they used to be.

The reason for each ostomy is different though. Say for example, an individual has colon cancer and because they still have cancer, they may be experiencing some other challenges. It is not the ostomy that is causing them to have issues. They may still experience pain or other discomfort or limitation because of the cancer…not the ostomy.

What I have learned is that the term disabled can resonate differently for different people.

Reactions can be mixed

“Does it bother you if people have the perception that you are in pain or are disabled?” a friend of mine asked me. “Or do you not care?”

I thought about that for just a moment and commented that I really don’t care. And most of the time I really don’t. But the one thing that I have found that does bother me is when others say to me, “You know. You're sick, and you’re limited in some way.”

It’s upsetting when they insert the word sick and when they assume you can't do certain things.

It’s just as bad, when they take things one step farther to say, for example, “Oh well, you know, you're sick so you're prone to getting COVID.”  

Having an ostomy is not sickness. For me, it certainly isn’t disablement, and it’s not really pain either. Like RU on Insta, I want to say it and repeat this so that people who don’t have enough knowledge about ostomies and ostomates can become more aware. I want to break through the stereotyping so the world will see ostomates as being just like everyone else—see ostomates as normal.

The snowball effect of empowerment

Overall, actually, if you visit the Insta pages of ostomates, you will generally see that they are pretty positive. Granted, maybe that's just because they're the ones who are publishing and everyone puts their best face on social media. Maybe there are just as many people sitting at home not feeling so good about any of it.

But I get a picture of positive, and I’m holding to that thought. Seeing someone on Instagram and reading their posts is very…well very empowering. And their posts encourage me to talk about my ostomy more so I can help empower others because I believe that when we are able to work through our challenges, we develop a healthier state of mind—as ostomates and in every day life.

RU summed it up just right: “It depends on so much more than bag or no bag.”

I have to say, I agree with him.

Life has an unusual way of pushing us to where we need to go. To me, that’s what Ostoh is all about. 

If you’re interested in learning more about Ostoh and how it might increase your comfort, email us at hello@ostoh.com or use our contact form. Our goal is to make your ostomy life easier and make you feel what it means to be yourself.