How to Actually Advocate For Yourself with IBD and Why It’s So Damn Important

Written By: Tatiana Skomski

I learned early on in my time spent at doctors offices that speaking up and standing up for myself was critical if I ever wanted answers to my ongoing health issues. I had to learn how to demand doctors do certain tests (that I only knew about because I did my own damn research) even if they told me no. I had to learn how to push back, ask more questions and not settle for no as an answer.


As a young woman, I found this to be extra difficult. The doctors I ended up seeing always seemed to be older men, who looked at me as naive or just plain stupid. The phrase, “this seems to all be in your head, honey” was said to me more times than I can count. And I’m pretty sure anyone with a chronic illness has experienced this before, too. But, this is what makes it feel so hard and unnatural. Culture and lived experience has taught us not to question authority figures like doctors. We have been told to believe everything they say to be true and that questioning them is rude because, well, they are just smarter than us.


I truly believe that learning how to advocate for myself was one of the things that truly made the biggest difference in my chronic illness journey. I wish that I learned how to do it sooner, and that I realized there is power in speaking up for myself.


Because I want you to be armed with all of the tools possible to live a beautiful life with a chronic illness, I’m sharing some of my tops tips and tricks when it comes to advocating for yourself:


  1. Trust your gut: No one knows how your body feels better than you. But it’s easy to start second guessing yourself when more and more professionals question you or tell you nothing is wrong. Your body is in pain because it is trying to tell you something. Listen to that and do whatever you can to get done what you need to get to the bottom of it.
  2. Practice with loved ones or in the mirror: Standing up and advocating for yourself is hard and it can be easy in the moment to let fear or embarrassment take over. Practicing with yourself in the mirror or even with trusted loved ones can be extremely helpful in getting some of those jitters out! It also builds your confidence to repeat and practice saying things out loud.
  3. Write down questions or things you want to make sure you cover with your doctor/person you are talking to: It can be easy to forget your questions or things you want to say in the moment. Especially when you only have 10-15 minute with a rushed doctor. You can also be distracted when you are talking with someone by their questions or direction they want to take the conversation. Bringing notes for you to consistently reference will keep you on track and ensure you cover everything you need to.
  4. Find a community to build your confidence: A huge component of learning how to advocate for yourself is gaining confidence. I believe the two live hand in hand. And having a chronic illness like Crohn’s or Ulcerative Colitis can be very isolating and in turn can really damage your confidence. I know it damaged mine for a long time! Gaining my confidence back was a process, but a huge component of it was finding my community who understood exactly what I was going through. It made me feel “normal” again. This is a huge reason I wanted to create this online community for others going through similar things that I had been through.


Feeling embarrassed or scared to advocate for yourself is pretty common. It can be uncomfortable to speak up against a person of power or when you have been told what you are feeling isn’t real or valid. But the sooner you can let go of those feelings by practicing and doing the above things, the closer you are to embracing being your number one advocate.