Posted by Autumn Erwin on May 19, 2023
I remember feeling so alone in my illness. I was diagnosed with at age six and I grew up alone with this disease I was told I had and would never go away. I was surrounded by so many people but felt so peculiar because I was the only one with this disease. I always wondered to myself, “why doesn’t anyone else have this thing called Crohn’s disease?” and “why am I the only one with it?”
I went more than 10 years with these thoughts and feelings about my IBD, never understanding or figuring out answers to my questions. I remember, up until the last couple years, never really acknowledging the fact that I had a chronic illness. I could go months without it ever even crossing my mind, until I would flare or have a recurrence of IBD symptoms like extreme joint pain. When I would flare or have tougher days because of my Crohn’s, I felt like no one understood my experiences and how they are DIFFERENT. For me, it's not just a tummy ache or a sore wrist or ankle; I don't just need to drink more water, it's actually that my iron is so low I feel the effects of it.
For many years leading up to 2020, I had been dealing with the worst anxiety of my life. I remember prepping for scopes one weekend and Monday I went in for my procedure and the subject of anxiety came up while checking in. I was asked if I wanted to be connected with psychology, IBD psychology in particular! I remember being at a loss and not knowing what else to do or try on my own, so I replied with “sure”, in a vaguely uninterested way...but deep down I was yelling “YES!!” It was the smallest and simplest answer of “sure” but the biggest and greatest “sure” I’ve ever said! Now, I not only had someone to help work through anxiety with, but someone to help acknowledge and work through IBD related thoughts and feelings I’ve been having for so long and can still feel and think sometimes.
I remember shortly after being connected with IBD psychology, my psychologist asking me, “Do you know anyone that also has IBD?” And I replied with an unfortunate and hopeless “no”. It had been 12 years and I had yet to know or meet anyone with IBD. My psychologist came back and said, “I have IBD too, I also have Crohn’s.” I’ll never forget that moment and the overwhelming amount of happiness and relief I felt when I heard those words; I finally knew someone else in this world with IBD too! I wasn’t alone! Over time my IBD psychologist brought up ImproveCareNow as we chatted and I loved the idea of getting to know others who also had IBD and becoming a part of something where I could let others know they’re not alone.
Fast forward to today - World IBD Day 2023 - and not a single day goes by that my Crohn's disease doesn’t cross my mind in some way. Now I'm sharing my personal journey and experiences (with both IBD and IBS) to help others not feel alone like I did and to help them feel things in a less anxious way.
If you are struggling and feeling lonely, I want you to know that you are not alone in your disease. If you are reading this story, you have just met someone who also has IBD and understands your experiences!
💚💙
Get #InTheLOOP with stories by Autumn on the ImproveCareNow blog >>
Join Autumn and the PAC - patients with IBD (14+) can learn more & connect at improvecarenow.org/patients
Stay #InTheLOOP - sign up for blog updates and never miss a post!
Join the ICN CIRCLE! - connect with a welcoming & supportive community, and receive IBD resources, community stories, and ImproveCareNow updates & opportunities. We are #BetterTogether
💚💙