Crohn’s and Colitis Awareness Week: What I Wish People Knew About My Disease

Everyday I am thankful for the life I have- the opportunities I have been given, my job, my family and friends… but sometimes I have a hard time accepting that my life was suddenly turned upside down four years ago. When I first began to have symptoms of Crohn’s disease I was 17, a recent high school graduate, and ready to embark on my journey into adulthood. Things were PERFECT. The last four years, since diagnosis have been full of struggle and loss, but also lots of gain which I want to share with those of you who may feel hopeless or that you can’t see an end to your pain in sight. Being a young woman it was very hard for me because I wanted to share my situation with others but I never felt truly understood.

Here are some things that I wish the people in my life knew about my disease:

1. Just because I look “healthy” does not mean that I am- To you my physical appearance looked great, to me it was a way to hide that I was feeling so terrible on the inside. Stomach pain, nausea, vomiting, and low appetite were just a FEW of the symptoms I dealt with on a daily basis other than the emotional trauma of not knowing why I felt so terrible. Having someone to listen to me was all I really wanted.
2. Your choice of words impacts me HEAVILY- To this day when people speak with me about my illness I notice a lot of people saying the words “I totally understand how you feel” when in reality, you do not. I don’t know how you feel, so how could you know what I am feeling? I know most people mean well, but sometimes it hurts and feels like your struggling is being minimized because that person thinks they can relate so easily when they really have no idea.
3. I still need to live my life, and you judging me for that is NOT okay- It seemed to me that a lot of people assumed I was not really as ill as I was, because I still enjoyed going for dinner with friends or having wine at a party. I enjoyed these things before I got sick, so why couldn’t I enjoy them now? Sure, my symptoms would get worse and I was so unstable with my illness in the beginning that it could actually put me out for days… but I had to learn moderation and slowly figure out what worked for me. This wasn’t easy, and the judgement never helped. I felt so alone and like my own friends didn’t want to spend time with me anymore.
4. Sometimes I just need you to let me vent- It can be so lonely to deal with a chronic illness as a young female, especially while your friends are healthy and living their best lives. The very few people who were there just to let me vent and blow off steam and LISTEN will always be appreciated.

Ultimately, I want people to understand that dealing with an incurable chronic illness as a young woman is challenging, and but as with every difficult situation we all need support. I am so thankful for my close friends and family because when I found the ones I could trust I felt so much more at ease!

I take questions/comments through my social media and love connecting with people who have IBD/chronic illnesses, please send me a message anytime!

Instagram: @rheadufault

Rhea Jenelle Dufault is 22 years old and a pediatric surgical nurse in Calgary, AB! She was diagnosed with Crohn’s disease in November 2018 after 3 years of physical and emotional agony. Many doctors wouldn’t investigate as far as they needed to, so finding the right specialist helped get a proper diagnosis. She enjoys being active, travelling, cooking, reading, and so many more amazing things that life has to offer.