Learning to talk confidently about your IBD can lead to greater acceptance of your diagnosis and a stronger sense of personal identity.
I think everyone who has a chronic condition has a variety of unique skills to learn. These might include random remedies for nausea on the go, such as peppermint oil in water, which always saves me. Some may learn Type A personal management skills, even if they’re definitely Type B, like me.
But one of the most important skills I have developed is how to use appropriate and confident self-disclosure about my Crohn’s disease, an inflammatory bowel disease (IBD). Learning how to talk about IBD the right way to friends, family, and coworkers is its own spoonie skill set.
The healthier my communication about my IBD has become, the more I have developed a strong sense of personal identity — rather than letting my Crohn’s shape my identity.
But it hasn’t always been easy. The ability to accept my IBD and to talk openly and confidently about it has taken me years, and I’m still learning. It has required me to reassess long-held beliefs about my diagnosis and the role my IBD should play in my life.
Before learning to accept my Crohn’s, there were always two nagging thoughts that stopped from talking about it confidently.
Before I was diagnosed with Crohn’s disease, I would get stomach aches a lot in elementary and middle school. Whenever chore time came around, I would use these stomach aches as an excuse to get out of doing them. Sometimes I really had an ache, and sometimes I was just being an obnoxious kid.
As kids, my older sisters always accused me of being a liar. Sometimes, they were right: Who doesn’t prefer reading “Ella Enchanted” in a hammock over polishing wood furniture? But sometimes they weren’t, and the pain was real.
It was stupid of me to use my sickness as a kid to get what I wanted. It came with bad consequences. When I was having the worst time of my IBD in high school, I don’t think my sisters really believed I was struggling at all.
I think they thought I was a liar.
This was isolating and disorienting. It made me question my own reality, which lead to its own string of issues, like dissociation or believing other people over my own symptoms.
I started to believe that talking about my Crohn’s openly was something a person only did if they were looking for attention. When other people with health issues were open about their conditions, I would cringe and squirm and judge them.
I love my older sisters very much. I know they love me very much. But my sisters were wrong, and so was I.
After I received my Crohn’s diagnosis, I used to always ask myself, “Why can’t I be like everyone else?” This phrase used to live like its own disease in my mind.
I just wanted to do my job like a “normal” person, study my chemistry homework like a “normal” student, and eat an oversized cheeseburger and french fries like a “normal,” gluttonous American.
It’s natural to have a difficult time with comparison and helplessness when someone tells you that you have an incurable disease. But the harder I held on to what I didn’t have, the worse I felt about myself. And the more I wished I was someone else, the more my Crohn’s disease was the only thing defining my identity. Irony, I see you.
This often led to me struggling with self-pity, which would get worse when my symptoms did. The more self-pity that ran rampant in my life, the more reaching out for help felt like I was also looking for other people’s pity — even if that’s not what I intended.
At times, talking about my IBD felt like I was playing the role of a victim.
When you’re having a difficult time, physically and mentally, it can feel like seeking connection or asking for help is just looking for attention or pity. Maybe that is partially true. Maybe, sometimes, you do want attention and pity, because you think that’s all you can get — and that’s fine.
But it’s important to remember that this isn’t the whole story. Asking for help is essential, and reaching out means you’re seeking connection. That’s healthy. For me, recognizing this took a long time as I slowly, but surely, learned to accept my diagnosis.
It took me a long time to accept that my life wasn’t going to be like everyone else’s. Accepting that was key to loving the life I do have.
It took me a long time to be proud of the things I can do and be honest about the things that I can’t — whether people believe me or not. Accepting this was key to feel more grounded in who I am.
It took me a long time to stop angrily focusing on my weaknesses, and to embrace the good and imperfect in me. Accepting myself was key for having healthier relationships with other people. I don’t need them, but I do love them.
During my IBD acceptance journey, my self-pity and fear of being attention-seeking shifted to self-acceptance and a love for healthy vulnerability. This shift has enabled me to talk more confidently about a flare, a dietary restriction or a lifestyle boundary with others.
Shifting the balance of those questions that had lived in my mind for so long was freeing.
Am I just trying to get attention? No.
Why can’t I be like everyone else? Because I’m me, and that’s amazing.
This shift has enabled me to be factual about my Crohn’s disease. It has allowed me to be pragmatic, empathetic, and solution-oriented.
Talking about IBD is not always easy, and people may not always believe you. You can’t really make someone understand what it’s like, but you know and that makes it true anyway.
I still struggle with self-pity on a tough day. I’m not perfect. I take it as it comes, and I keep trying. This makes me brave and courageous. It makes you that, too.
Talking openly and honestly about Crohn’s doesn’t have to mean we’re fishing for pity from people or wallowing in self-pity. It doesn’t innately mean we just want attention. But maybe we do want connection, and that’s healthy.
Healthy identity and communication are pragmatic parts of living with IBD. Learning love and acceptance for ourselves makes it easier to do.
Even though it isn’t easy, and it may not involve eating as much ice cream as I would like to in the process, learning to talk about my IBD has been a huge part of my acceptance journey.
Be kind to yourself and remember that you aren’t simply seeking attention or pity. Instead, you are learning to accept your diagnosis and achieve healthy connection.
Fact checked on March 28, 2022
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