Hindsight is 20/20 but I wish when I was diagnosed with Crohn’s disease 18 years ago that I could have had a crystal ball to show me all that my life would become despite my IBD. I’ve been where you are. I was fresh out of college, 21-years-old. My world as I knew it came to a screeching halt. I went from being a healthy, full-of-energy young girl with not a care in the world to being hooked up to IVs and told I had a chronic disease with no cure. Gone were the days of being medication free. I walked into the emergency room completely ignorant and naïve to what was happening and left in a wheelchair on 22 pills a day.
Back in 2005, nobody was posting on social media about their health issues. Heck, Facebook hadn’t even been out for one year. I felt completely isolated and alone with a complicated diagnosis of an unpredictable and often debilitating disease. I spent the first decade of my life with Crohn’s being very private about my diagnosis. I worked at television stations as a producer, reporter, and morning news anchor—but there was so much behind my smile that I shielded from the public because I didn’t want sympathy and I didn’t want to be looked at as less than.
When I left the news desk in 2014, I was ready to be the voice I needed to hear so desperately upon diagnosis. I was ready to show people who were at the beginning of their journeys that life doesn’t end with an IBD diagnosis. Your plans may be halted for the time being and there may be detours, but you can still reach your destination.
Receiving a chronic illness diagnosis is a lot to handle—it’s complex. Don’t beat yourself up over feeling overwhelmed. Take time to grieve the loss of who you were before diagnosis but understand your IBD is not your identity. Having Crohn’s used to feel like it was the headline of my life story. Now, as a happily married mom of three kids, it’s the footnote.
As the days and years pass and as the flare-ups come and go you will gain so much more than you lose. You’ll have a newfound perspective that’s untouchable to your peers. An IBD diagnosis forces us to mature and cope in unimaginable ways, but the very pain that brings you to your knees on the bathroom floor and causes tears to roll down your cheeks in the middle of the night will cause you to gain intense empathy and compassion for others. You’ll realize your strength and resilience is limitless.
No setback will happen without a greater comeback.
Don’t compare your journey to anyone else’s. While there will be many similarities within the IBD family, our experiences are all unique. What works for one person whether it’s diet, medication, or surgery, will not necessarily work for you. Trust your care team. Advocate for yourself. If something doesn’t sit right with you, do your research, and speak up. You know your body better than anyone else. Connect with the thousands, if not millions, of people on social media who boldly and openly talk about their life with IBD. Talking with someone who gets your reality is priceless.
The grief of your diagnosis will wither away in time and instead, you’ll see your IBD as a badge of honor. You’ll often reflect on how much you’ve been through and what a badass you are. It’s not easy to stare at your emaciated body in a hospital bathroom mirror while you’re tethered to an IV and you see all the bruises up and down your arms from the battle of your latest flare-up. It’s not easy to go to a family party and worry and wonder if your food choices are going to cause you embarrassment in your aunt’s house. It’s exhausting to try and put on a front when your average pain level would cause most people to go to the hospital. The pain scale of 0-10 really doesn’t work for the IBD population. It’s not easy to wake up each morning and have no clue what your body is going to do.
Trust that you have everything and more to fight this disease tooth and nail.
We all know you can feel fantastic and like a “normal” person at breakfast and be hospitalized by dinner. There’s no rhyme or reason. Focus on the days when you feel well, and the sun is shining on your face and your IBD has caused you to recognize how beautiful these seemingly simple and mundane moments are. Focus on the times when you feel in control. You are always in the driver’s seat. Sometimes steering in unchartered territories is scary and that’s ok. You’ll always find your way.