The Psychological effects of IBD: My Crohn’s Story and how I Overcame It
*Important: This is an opinion piece. This information should not be used as a substitute for the medical care and advice of your physician. There may be variations in recommendations and treatments that your physician may recommend based on individual facts and circumstances.
When I first was diagnosed with Crohn’s I typically did not talk to people about it. In fact I often kept how I was feeling to myself, or tried to hide how I looked. My face typically looked sick (as in pale, soft looking flesh, acne due to medicine, and limited fat or muscle due to weight loss). I tried to conceal my body under layers of clothing, almost all the time. Which made it quite difficult to showcase how far I’ve come in terms of my health and wellness over the years because, simply put I didn’t want to keep a memory of it. I imagine many people feel the same way as I did. And, quite frankly this is okay.
Now, obviously based on my other posts, my Instagram account and YouTube channel this is not really the case anymore, as I have become to love how far I’ve come. I’ve done it with the help of medicine, but mostly through my own controlled means: like training hard at the gym, and a sound diet that compliments my lifestyle (ie. No alcohol, and monitoring fat and carbohydrates weekly and daily).
But this is not what I want to discuss. I want to talk about the psychological effects associated with having IBD and Crohn’s disease. Quite frankly it is a shitty topic (pun intended). There is a huge lack of psychological concern for patients by GI doctors (my doctor wanted me to walk around with the feeding tubes because I was not gaining weight fast enough, in my grade 12 year aka final year of high school…yeah, ok). Could you imagine the social stigma I would have faced on the daily? Let alone, how stupid I would have felt. This not only creates problems, but also illuminates the crap that is associated with this disease when it is uncontrolled or flared up.
Additionally, individuals with the disease definitely create internal mechanisms of stress just because of a lack of understanding and awareness of how to deal with the disease, as well as general fear of not being normal. If you feel this way, you are not alone. I felt this way for most of my first degree (roughly 3 years of my 4 year degree). To a certain extent I still feel this way. I often search for bathrooms first thing when I arrive at a new place. Just to be safe. I don’t need to, but it has become innate because of my fear of not being in control. As a result I don’t feel normal, I am aware of it. To be honest, some of my friends still joke and make fun about it. It used to bother me a lot, but I’ve learned to just roll it off.
The simple fact that we are different than others, who do not have IBD, who do not have IBS and do not have GI issues is something that I (and you the reader if you struggle) must learn to accept. It will continue to eat you up, the way it did me. I used to say to my mom, before I was diagnosed, that I wanted to just end the tests and give up, live with the pain and hope that one day I become “normal”. I used to use this word “normal” all the time. Most of it had to do with my social situation: being in high school, being judged, to my face and behind my back took a huge toll. People used to make fun of my acne, saying I had craters on my face (luckily they’ve mostly healed), and others, who were supposedly close friends used to point out that I look like I left a concentration camp from WWII.
So, at this point, you’re probably wondering, WTF, so, what did you do to overcome this? And more importantly, what can I DO? (If you have IBD and are feeling the way I did). Well, I’m going to tell you 3 major things you can do, and I honestly hope you do, because it changed my outlook dramatically when I did.
The first thing is: recognize you are different and accept it. But not in the hippy dippy, BS type of way, as in: “we’re all different, so let’s sit and sing camp fire songs”, but rather recognize that at an organic, biological and physical level, you are different from those around you. Be proud of it. It is who you are. Embrace it. Hiding it, shunning it or being ashamed that you go to the bathroom a lot, or pass gas frequently is not worth it. It creates stress that you don’t need. Heck you already have enough, increasing stress has been linked with increasing flare ups…and we don’t want more of those.
The 2nd thing is to not give a “crap” about what others say about your habits. I say this in a specific metaphorical light. If someone is legitimately trying to help you, with proven medical or even anecdotal advice, maybe don’t be a dick. Hear them out, do your own research and follow up. However, if someone (like most did in my past experiences) just blatantly offer useless and pointless advice (or at least you perceive it this way), then don’t pay attention to it. For example, there is a huge difference between someone suggesting you use probiotics to aid in GI health, and someone saying, oh maybe you should just not have raw fruits, because I told them how melon bothers my stomach. First of all, every case of IBD and IBS is different, so this is pointless to say raw fruit is bad, and secondly clearly there is no thought there. I could go on but I digress. Simply put, be aware that people will likely try to help, without actual science, so don’t be a dick, but chances are you will have to pilot your own trajectory of the disease, beyond what your GI doctor says.
Finally, the last, and probably the most important is…wait for it…it’s a douse…talk to someone. Have an outlet. It doesn’t necessarily have to be a professional, but simply talking about how you are feeling, how you ate for the week, or day, and how you are coping is tremendous. I remember before Carly (as she is a main outlet now), I used to talk to my good friend, Luke. He honestly knew nothing about Crohn’s and IBD. I’m pretty sure to this day the extent of his knowledge stems from what I tell him (like the rest of my family and friends). But he was always there to listen, provide his opinion (to which he’d admit if he knew nothing or not a lot about the topic) and to simply calm me. Many a days would I have stress that exacerbated symptoms. Some days, he’d come over after school (as I only went to 42 classes in all of grade 12), and we’d just watch TV or play some video games. We didn’t even have to talk, he just knew. Having an outlet like that is probably the healthiest and most beneficial for one’s psyche when it comes to anything in life, Crohn’s disease and IBD is no different. I know for everyone this is not necessarily possible, but I assure you there is someone who is willing to talk with you. There are forums, such as places like Reddit, that in my experience have offered some helpful advice. It doesn’t offer the in-human effect, but it does feel better than staying silent, or only talking to your GI doctor. If you need someone, I’m even here! Trust me on this one, don’t stay silent. I tried it, it doesn’t work at all. You will feel worse, symptoms will seem never ending as you will be in your head, thinking about the disease more. Try what is hard.
Well ladies and gentlemen, I hope you found this to be a good read, every time I talk about my experiences I end up ranting a little bit, but I hope it helps you!
As always, stay strong,
Share your Story on CDHF.ca
Fill out the form below to have your story added to our website. Choose “Anonymous” in the name field if you would not like your name to be displayed.