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:
- 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.
- 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.
- 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.
- 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!
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.
I was diagnosed at 21. My experience was almost the same and I appreciate you letting people know that just because they mean well doesn’t mean it makes us feel better. I am UC so a little different than yours but in some ways worse as I am constantly running to the bathroom so urgently I almost don’t make it 6-20 times a day. I have had a good life… I have continued to live that life despite my challenges and 11 years later I am proud to say my IBD doesn’t define me. I am flaring right now and pregnant with my second baby so that sucks and I can see the people around me trying to be supportive… “you look so great. You don’t even look sick”, “I know how you feel I had food poisoning once” etc. I bite my tongue cause I know they mean well but it doesn’t help and after 11 years I am sad to say the things you listed above are still happening to me. Anyway you’re not alone! You’re amazing and strong and I KNOW HOW YOU FEEL! But I am allowed to say that cause I am a fellow IBD warrior!
Thanks for sharing your experience. My nephew was diagnosed with colitis last year. I want him to know I care and I am here for him but do not want to be intrusive either. Best wishes to you! Margaret
I was diagnosed at age 8. Such a whirlwind at such a young age for me. I almost got a colostomy at age 12 but my dad “my hero” told them no. I did get “better” through my teen years for the most part, but it came back in my mid 20s. I am a float nurse so my coworkers for the most part somewhat understand but it’s still not the same as going through all
This crap. The Med that helps my Illness also makes me tired beyond belief but I guess that’s the trade off for keep my intestines intact! It’s always nice to hear I’m not alone! Keep your heads up guys!! Keep kicking ass in the game of life!
I have a few of the same pictures between the 14 transfusions that I received. It’s always amazed me how much better I felt right after them. I hated the times I had to go in as an outpatient for them; they make you stay 2 hrs once they start. First ones for one transfusion; second is for observation, making sure you won’t react too squirrelly with it. That 2nd hr was so hard because I finally had energy to do something other than lie down on the couch or the bed.
Tina Englett, KS
Crohn’s survivor of 18 yrs (wow, didn’t realize it was that long ago!)
Thanks for sharing your story. I got diagnosed during high school (2004ish) and am so blessed that I was able to find love, make it through my wedding day without issue, and birth and breastfeed two healthy and adorable kids. There’s hope for a brighter tomorrow, hang in there! P.s. I like to read too, added you on Insta (galigaligumdrop)
Thank you for sharing. As a retired physician it saddens me how frequently I saw patients like you who had not been taken seriously and not investigated by colleagues. I am happy to hear you found your way to the care you deserve.