Talking About the Embarrassing Stuff

Hi all. Apologies it’s been so long since I’ve posted. This week we are talking about embarrassment. IBD and embarrassment kind of go hand in hand…

Adventures in IBD

If you live with Crohn’s disease or ulcerative colitis, chances are you have had a few embarrassing experiences. Or a lot of them.

They can be hard to talk about…the humiliating medical procedures and interactions. The unpredictable bowels. The frequent sprints to the bathroom. Smells. Accidents. The toll IBD can take on your appearance, energy, and mental functions. It goes on and on…

And, as if all of that wasn’t hard enough, IBD still carries with it a shadow of stigma. Many people (myself included) are often uncomfortable discussing anything even remotely related to poop, bodily functions, or bathroom habits. But why is this? Everyone poops. It’s a fact of life. Why do we make people feel bad about it? Why does society often say “keep those things to yourself?”

I’m sure there are countless socio-cultural explanations. In truth, prior to my diagnosis, talking about things like bowel habits wasn’t very high on my list of priorities.

Taboo subjects

For people living with IBD and other chronic illnesses, embarrassing or difficult experiences can become the norm. Especially if you are newly-diagnosed or in a bad flare. These experiences can be traumatic. Demoralizing. You may think “I sure as hell didn’t sign up for this”. I’ve been there. I say that all the time.

One thing I’ve found is that not talking about struggles or embarrassments often makes it 1000% worse. It can magnify feelings of self-consciousness and shame. Finding a balance between “over-sharing” every single detail about your IBD and keeping all of your difficult experiences bottled up is super important. There is a happy medium. And sharing can be liberating.

Talking about the “FML moments”

Most people find at least some comfort in knowing that they are not the only one going through a difficult experience. In talking with another person, it can be reassuring knowing that another human being is at least trying to understand what you might be going through.

And IBD can be so incredibly isolating. Many times it can feel like you are the only one on the planet who is going through these awful, humiliating experiences. When I was at my sickest, I didn’t know anybody (my age or otherwise) who was dealing with IBD or chronic illness or something similar. It was hard.

A lot of the time, I just wanted another human to listen. Someone to validate my experience and tell me “it will be ok”. Nothing more. They didn’t have to fix things. Just listen.

Often this didn’t happen. And it took a toll on my mental health. A lot of it was my fault too…as I felt so ashamed about everything that I refused to seek people out and pushed others away.

OMG that really happened…

I remember so many instances when IBD made me feel incredibly alone and embarrassed, such as:

• Not wanting to leave the house due to fear of having an accident or not making it to the bathroom in time
• Having to constantly leave meetings or conversations at work and run to the bathroom
• Throwing up at inconvenient times or inconvenient places (lol is throwing up ever convenient?)
• Colonoscopies and scopes being inserted into various orifices
• Prednisone weight gain and emotional rollercoasters
• Ostomy issues and leaks, especially early on
• Waking up in the middle of the night to dirty sheets after having an ostomy leak, or not wanting to sleep next to my partner because of this

There are countless others. Reflecting back on how bad those experiences made me feel, it almost seems like they happened to another person.

So what has helped?

Unfortunately, I have yet to find any magic bullets to deal with the embarrassing moments resulting from life with IBD. However a few things stand out which have a bit.

Time. The passage of time has a weird way of dulling traumatic experiences. Things that I thought I would never get over seem like less of a big deal now. It seems like BS in the moment, but the impact of embarrassing experiences will ease with time.

Talk. Find someone you trust that you can share with. Someone you can vent to. This could be a friend, a counselor, a family member…whoever. Online or in-person IBD support groups can be good outlets too, if those sort of things interest you. There is great healing power in talking about difficult and embarrassing experiences with someone who can listen compassionately and non-judgementally. Someone who tries to empathize.

Journal. Write. Even if nobody ever sees it. Write down the things that suck and are infuriating and unfair. Also write down the people and things that you are grateful for. The simple act of releasing pent-up trauma and frustration (and love) out into the universe, in whatever form, can be very therapeutic.  

Celebrate your resilience. Your survival. Pat yourself on the back for making it through tough experiences. You may be going through challenges few people have to deal with. That makes you a badass. Think about whether these difficult or embarrassing experiences have taught you anything (Humility? Compassion for others? Maybe you are stronger than you thought?) Acknowledge milestones and how far you have come in your health journey. Treat yourself.

Own it. This is the hardest one. Sometimes you just have to own it and do your best not to give a crap what other people think. Be open, be honest. Often, the more you try and hide issues related to IBD, the more ashamed you will feel. People will either accept it or they won’t. Likely, the people who are not accepting are not worth wasting much of your energy on…so don’t.

Taking it in stride

So there you have it. Embarrassing experiences are going to happen when living with IBD. They are all but inevitable. Sometimes they will be really hard to deal with. That’s ok. Don’t be afraid to talk about them.

Try to find humor in situations. Embrace your imperfections. We are all flawed. With IBD, your flaws just look a little different than other peoples’.

Mistakes and bad luck are all part of being human. Be as gentle to yourself as you would be to a friend or loved one going through something similar. Let go of constant comparisons to others.

Most of all, as you practice self-acceptance, be patient and compassionate with yourself. Like many things, it’s a journey…the steps are more important than the destination.