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Why Advocacy Wasn’t A Choice For Me

So often I am asked why I chose to become an advocate. For me, I’m not sure it was ever a choice. It was a matter of living or suffering in silence. And I did – for years. I didn’t have anyone in my life when I was diagnosed & every time I’m asked, there’s a certain picture and time in my life that vividly flashed through my mind.

I didn’t know much about Crohn’s disease when first diagnosed

That image was someone who is mangled, broken, scared, and in desperate need of support that only can be given by someone she hasn’t met yet – her future self. Someone desperate for knowledge that was not volunteered when I left the hospital with three distinct letters – I & B & D – not having any idea what those letters meant, what those letters would mean long-term for me and how I would need to learn to deal with my circumstances I couldn’t avoid. A frail, cloudy-minded 17-year-old with little to no information provided about Crohn’s disease, but knew that I narrowly escaped death, despite not remembering the previous 2 months I’d “lived”. I was alive, but I didn’t know why and I didn’t understand any of what I had just gone through.

With all of the resources, outlets and accurate information that we have now in 2019, I find it hard for me to hold back the information that I sought for 15 years living with Crohn’s disease and desperately seeking answers.

I know the awful feelings that come with diagnosis

I advocate for each person who feels like I felt when I was diagnosed. when you have 1000 questions and 0 answers. When the world feels like it’s crashing down and everyone is there to watch you collapse because they are helpless as well.

It didn’t take days or weeks or months to become this person. It took years. and I still slip up. I make mistakes. I still grieve, I still think I want to give up some days. But then the feeling comes over that the only person who will save me is myself. And that is my greatest strength.

What advocacy has done for me

Advocacy and activism have brought me closer to answers and accurate information, but it has also brought me closer to others experiencing the same things I am and similar things to what I have been through. It has brought me life-long friendships with other Crohn’s and UC patients. It has brought me a better understanding of disability, empathy, self-love. It’s given me an outlet when there are things I still don’t understand and it’s given me doctors, patients and colleagues to help me get through the roughest of times, usually when I don’t want to accept the help offered. I’ve also learned to accept help.

All my life I’ve always been more worried about the people around me, than myself. Perhaps advocacy is another outlet to help others in ways I cannot help myself. But I’m learning. I’m learning to accept things that I have no control over, like hospitalizations. I’m learning to accept help from family and friends. And finally, I’m learning how to love myself more deeply, flaws and all.

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


  • Julie Marie Palumbo moderator
    2 months ago

    Thank you so much for being an advocate, Kelly! I completely agree with you in that you get so much more as a patient to be open and share with others than if you do not. Keeping quiet about my disease has never benefitted me, yet speaking up has created opportunities and friendships.

    We appreciate you being here as a part of our community and hope you continue to advocate on behalf of yourself, and others who cannot do so for themselves. Thank you for being a bright light 🙂

    –Julie (Team Member)

  • crystal.harper moderator
    2 months ago

    It’s not easy to put yourself out there and being vulnerable to the world, but as I’m sure you already know, you are probably helping more people than you even realize. The last paragraph of your post makes me so happy. Self love is important and I’m glad you are finding it! I would love to hear more about how you are doing that if you ever need an idea for a future post 🙂

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