My 5 Ulcerative Colitis Insecurities — and How I Overcame Them

Patient Expert
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I’ve overcome a variety of insecurities throughout my life, but some days, I still deal with them more than I’d like to admit. Some of these insecurities relate directly to my ulcerative colitis (UC).

Here are five of the insecurities that come with living with a chronic condition like UC, along with my top tips on how you can combat these worries, too.

‘I’m not sick enough’

Not feeling “sick enough” is my biggest insecurity around my UC. While I’ve dealt with flares, trips to the emergency room, two hospitalizations, and a slew of mesalamine treatments, I’ve never felt “sick enough.”

I know a lot of women and men with inflammatory bowel disease (IBD) who have long hospital stays, have ostomies, and require infusions to take their medications. But I don’t. I’m physically active, and I feel good most days. This has led to guilt and insecurity around my disease. I wonder if people believe that I’m actually sick.

As the years have gone by with my diagnosis, I've learned to take my disease in stride. I feel grateful that I’m not “as sick” as others. That may sound selfish, but it helped me realize that because I do feel OK, I can step up and be an advocate for those who might not have that luxury. I take my good, healthy days and use them to my advantage.

Going to the bathroom 'too much'

I use the bathroom a lot. I’m fine using the bathroom as much as I need to when I’m at home, but when I’m out or at work, I get very insecure about constantly having to go. I’ve had to leave meetings, I’ve had to try to hold it in during a movie, sporting event, or concert, and I’ve definitely sat in public bathrooms in silence, trying not to poop when someone else is in there.

The stigma around pooping and women is something I’ve tried hard to shake off. I always feel a lot better after I use the bathroom, and sometimes, I just can’t hold it.

My solution? Remind myself that this is my normal. And I carry a bottle of Poopourri with me. Much to my surprise, a lot of people I work with don’t even realize how often I go to the bathroom. And when I’m in other public places — well, I tell myself that I probably won’t see any of those women again anyway.

Canceling plans

The insecurity around needing to cancel plans and/or leave in the middle of a social engagement is a big one for me. I pride myself on being a punctual person. So, when I do have my bad days — when I’m too tired, my stomach is cramping, or I’m having lots of bowel movements — I am terrified to cancel or ditch out on plans in a hurry.

Again, the root of this fear is the stigma that comes along with it. Friends think you’re being selfish or avoiding them. Feelings always seem to get hurt. For a while, I kept my calendar open and wouldn’t make plans with anyone because I was tired of fighting and defending my reasons for canceling at the last minute.

How do you get over this? For starters, I keep making plans. I also make sure to make plans with friends and family who get it — the ones that, if I cancel, come up with an alternative plan to meet me halfway. Those who truly care about you will never get angry at you for prioritizing your health.

Fear of talking about my disease

While I am comfortable talking openly about my UC now, this wasn’t always the case. For a while, I didn’t want anyone to know about my UC because I didn’t want to be treated differently.

However, there’s a lot of misinformation around the disease, and I now know it's important to me to be an advocate. I realized that the more I talk about UC, and inflammatory bowel disease (IBD) in general, the more comfortable I become with it. I talk to my employer, my friends, my family, and my coworkers. It’s important to keep repeating the practice of talking about it to get more comfortable with speaking up — and doing so helps others become more educated, too.

Justifying my food choices

My final insecurity is around justifying my eating habits. I work and interact with many people who are what I would call “healthy.” You know — the ones who always opt for a salad with no dressing and some baked chicken. Or the ones who use all the trendiest ingredients in their smoothies. My "abnormal" food choices become especially apparent when I join these people for lunch or dinner.

I feel judged by the food I eat, because sometimes, I just need to have a plain grilled cheese, or maybe a burger from McDonald’s, because I know it’ll back me up. It’s not “healthy,” but sometimes it’s all I can stomach.

To deal with this one, I try to remember to ask myself: How am I going to feel after I eat this? Is it going to give me stomach cramps? If yes, then I won’t eat it. I want to feel as good as I can, and sometimes that means eating junk food, or sucking down a bowl of broth. I remind myself that I don’t have to justify what I eat because I know my guts better than anyone.

The bottom line

It’s normal to struggle with some insecurities about your chronic illness. No matter what your personal worries are, remember you are not alone. While your “normal” may not be the same as everyone else’s, it’s important to keep in mind that it’s perfectly OK to live life the way you need to in order to be as healthy as you can be — whatever that may mean for your personal situation.