You did nothing to cause your diagnosis or your disease. Read that again. It’s not your fault. No matter what you may see on social media or hear from friends or family, those of us with Inflammatory Bowel Disease did not live “incorrectly” or do anything damaging that “sparked” our chronic, autoimmune issues to come to life.
I was incredibly disheartened recently by a post on Instagram that in so many words claimed that bad habits in life led to a man’s Crohn’s disease. He made blanket statements about how medication and surgery are not necessary and that it just takes a long time and reflection to reverse the damage he caused on himself after years of smoking, binge drinking, etc. The post was not only on his own feed, but also shared by a community IBD page with more than 8,000 followers. After days of endless comments from those angered by his assertions and claims, the post was taken down and the patient “advocate” made his Instagram private, but the damage was already done.
Hold up—what’s with the blame game?!
You may wonder why patient advocates like me get their feathers ruffled by claims like this. I can tell you why. I, along with so many of my counterparts in the IBD community, work tirelessly to educate and inform not only those with Crohn’s and ulcerative colitis about the patient journey, but also caregivers and friends. When misinformation is disseminated it sets the clock back, bigtime. It further stigmatizes our illness, especially when the false statements are said by someone who lives with IBD. Not only does it hurt those grieving and trying to come to terms with their lifelong diagnosis, but it’s a direct attack on those diagnosed as pediatrics and those who did everything by the book (ate well, exercised, got lots of sleep, managed stress, etc.) and STILL got IBD.
If there was a magic bullet or diet that helped “cure” or manage all of us, we would do it. If there was a way to prevent IBD, people would do it. Crohn’s and ulcerative colitis aren’t like lung cancer, which is sometimes caused by smoking or diabetes which is sometimes caused by being overweight or liver disease which can be caused by excessive drinking. IBD is complicated and mysterious. There is not a behavior or habit that is associated with possibly “getting it” one day. The two known factors—hereditary and environmental—leave much to the imagination. I personally have no family history. I was a picture of health until the two months leading up to my Crohn’s diagnosis in July 2005. It felt as though a light switch went off and my world went from being healthy and able-bodied to being chronically ill.
You did nothing wrong
If you’re reading this and wondering what you did to cause your disease, the answer is nothing. If you’re reading this as a parent and feel as though you could have fed your child less processed food or breastfed them instead of giving formula or shouldn’t have had your child vaccinated, please stop believing that. I know we all want a reason. We all want answers and some clarity as to the why—but, at the end of the day, does it really matter? Focusing on the why doesn’t help us focus on the how. HOW are we going to get through this? HOW are we going to manage our disease and live a full life? HOW are we going to cope during flares and periods of remission? HOW are we going to navigate the unknown and thrive? HOW are we going to find the right treatment plan? HOW are we going to target our triggers and learn what to avoid? Focus on what you can tangibly do to improve your patient journey and less on the coulda, shoulda, woulda’s, because just like each case of IBD is unique, so is each back story.
Stop the finger pointing and the blame game. Stop making the medical community out to be the bad guys and the adversary. Stop acting as though those who depend on medication and need surgery failed in any way.
Start collaborating with your care team and finding physicians who listen and genuinely care about the approach you wish to take to manage and treat your disease, while also understanding that a holistic and “med-free” approach may not be feasible for your type of disease process. Start getting involved and educating yourself about how IBD manifests and the complicated nature of not only Crohn’s and ulcerative colitis, but also the extraintestinal manifestations and mental health aspect that are often not talked about. Even if you’re on medication or have had surgery you can still take whatever measures make you feel better in a complementary way. It’s not all black and white. There’s so much gray area. You can be on a biologic and still try any “elimination diet” you’d like. It’s just a matter of doing what works best for you, without pointing the finger or demeaning others in our community. Start connecting with those who live your reality and lift you up, rather than make you feel like you’re taking the easy way out.
I know that if my 21-year-old self came across posts on social media claiming I caused my Crohn’s and that I could “heal my gut” on my own, I may have believed it. I can tell you nearly 16 years into this, I know without a doubt that is not the case. I am not a failure for taking medication, needing surgery, or trusting my physicians. I credit my 5.5 years of remission to being a compliant, proactive patient who believes in science, educating myself on the facts, and realizing that this disease is bigger than me and a constant learning process. I don’t need to know my why because I’ve done a damn good job of discovering my how’s and you can, too.