Skip to Accessibility Tools Skip to Content Skip to Footer

I Was Wrong

When I was first diagnosed with Inflammatory Bowel Disease, I was extremely uncomfortable, mentally and physically. I’d been experiencing pain, fatigue, blood loss, blood in my stool. You know, the works. Even the conversation with the diagnosing physician was uncomfortable. I didn’t understand what he was saying. It seemed like he was just rambling on, about what?! I couldn’t tell you.

Hiding what I was going through with IBD

I didn’t really understand how severe my condition was until I’d been on steroids for a while. Suppressing my immune system had caused a lot of damage. I was constantly sick, always in pain, something was always swollen. It was during this time that I realized I’d never be comfortable with my condition. I decided no matter what, no one outside of family would ever know what I was really going through. I lied for years about my disease. I lied about symptoms and I refused to tell anyone about the tests I had to go through. I was embarrassed and a part of me felt like if I hid it long enough, it would just go away. It was almost as if I thought the more I hid what I was going through, the more my symptoms would subside, until I never would even need to acknowledge it (anymore).

But, hiding only made everything more difficult

Obviously, I was wrong. Hiding my condition only made my life more difficult and tolerating it unbearable. This was one conclusion I’d come to shortly after the others. Although I knew this, I still refused to disclose my condition, to anyone. People just wouldn’t understand. How could they? This was something so personal and knowing that your body has failed you every single day of your life is just not something I ever imagined other teens would be able to relate to.

So I continued to hide it. It wasn’t until my early 20’s that I decided to open up about what I was going through. As expected, not everyone understood. That’s okay. Some people don’t. They have a right not to. It’s not something they probably hear about everyday. Much to my surprise, although there was a good amount of people who didn’t understand, a lot of those people had a desire to. Not everyone could relate to what I was going through. A lot of people I’ve met have never met someone with Ulcerative Colitis, but they still put in the effort to learn. They tried to get to know me, they tried to understand how different, yet similar we were all at once.

I was worried that others would judge me and IBD

I never wanted anyone to judge me, that’s the main reason why I hid what I was going through for so long. I never took the time to realize that all along I’d been judging myself and judging others before I’d even met them. I assumed people were shallow. Unkind. I passed judgement on myself thinking I wasn’t good enough to hang around “healthy people.” I thought I didn’t deserve friends. I was wrong. Living with IBD didn’t make me any less of a person. It didn’t change who I was. I was born Shawn and I always will be Shawn. I was wrong for giving my condition the ability to control my life for so long.

I was wrong, but I learned from it.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The InflammatoryBowelDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Lray
    7 months ago

    I’ve learned to be very open about the disease I have. It’s realistic that not everyone will understand or want to deal with this, including family. I’ve dealt with this largely on my own for the last 15 years. I’ve learned since I’m the one telling my story, I get to reflect my own attitude about the disease.. but hey, remember it’s not contagious.. It’s reality mixed with humor.. Those who walk away from me because I have the disease, it’s their loss because I am more than the disease. It’s better to have a few close friends than many acquaintances.

  • ShelbyComito moderator
    7 months ago

    Hi @lray, thank you so much for taking the time to share your thoughts! I agree – I think openness and a bit of humor can really help build awareness and connectedness among one another. We appreciate you sharing and hope you always feel heard and welcome here. – Shelby, IBD.net Team Member

  • thedancingcrohnie moderator
    7 months ago

    So well said @lray. Thank you for sharing your thoughts.

    Always dancing,
    Elizabeth (team member)

  • johnslinda069
    7 months ago

    I understand that you didn’t want people knowing your condition. I had people not wanting to be around because they didn’t understand that they couldn’t catch what I had. And that was family members! So for years I had no contact with many people. Now I have just just learned to over look them.

  • thedancingcrohnie moderator
    7 months ago

    @johnslinda069,

    That is so upsetting. It is fact that IBD is not contagious. So sorry you had to go through that. But, if we must see the silver lining in life, perhaps it is better that they are no longer around to bring in negativity in other ways.

    I hope you are doing better these days.

    Always dancing,
    Elizabeth (team member)

  • thedancingcrohnie moderator
    7 months ago

    I can relate to this. In the beginning I was very hush, hush about my diagnosis. I have to say, I wish I would have opened up more from the start. The support I received was amazing and uplifting.

    Always dancing,
    Elizabeth (team member)

  • Poll