The way I have felt about making time to explain (or to not explain) my IBD has changed since I was diagnosed seven years ago. Early on I felt like no one understood, and therefore I didn’t put any energy into talking about it. Unhelpful comments and ignorance were hard for me to get past. It took me a long time to realize people can’t understand what they don’t know about.

Now, I feel like I have a responsibility to educate people about IBD and how it affects me personally. I share my story so others can be aware of what I go through on a daily basis and how serious it can be. Opening up about my life with Crohn’s has helped open people’s eyes to a life that’s much different than theirs. Using my story as a teaching tool helps to replace ignorance with understanding and stops people from making assumptions.

Over time, I’ve cultivated the right attitude and mastered my own art of talking about IBD. It’s a balance, because some people might have a previous understanding of IBD or medical experience of their own. And then sometimes people just aren’t aware at all – I have even had to spell it out for doctors and nurses.

Whether I’m standing my ground questioning a treatment option or advocating for something I feel strongly about in my care; explaining my diagnosis or discussing daily symptoms and changes in my health with friends and family, it’s important to me that I make the time to explain. Being honest about who I am and what IBD is like in my life has truly helped me cope. It reminds me I’m doing the best I can to take care of myself, and that I’m spreading insight and awareness about something that is such a big part of my life.

Having other friends and family who are affected by this disease, and knowing how many more people will be affected in the future, pushes me to keep talking, to keep improving the general understanding of IBD, and to keep trying to help others find their own art of talking about it. Being connected to group of people who have similar experiences to me – the PAC – has really helped me find my voice and define my message. So, I encourage you, if you’re looking for some support and encouragement to get started talking about IBD and the impact it has on your life, to join me in the PAC (there’s a link in the footer) 💚💙


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