It's Crohn's & Colitis Awareness Week, and this will be my 13th year to recognize it {my 14th Christmas with Crohn's}. It's wild to think back on those first days of my initial diagnosis and see how far I have come, while also feeling like I am fighting many of the same battles...
This year's theme for Awareness Week is "IBD Looks Like..." Because it doesn't look like just one thing. It's a million little moments, often invisible, that make up a journey of managing this awful and unending disease. While there are certainly struggles and many defeating days, there are also wins and reminders that progress is possible, and I am so grateful for all the grace I have been shown on this journey.
For me, IBD looks like...
...managing symptoms on a daily basis, whether it's from the disease itself or the side effects from the medications needed to keep the disease at bay. It's settling for the side effects because the disease symptoms are far worse. It's operating at 70% on a "good" day. It's pushing through the pain and discomfort that would bench most people, but you have learned to function in spite of it, because otherwise you would never get out of bed. It's realizing that you are stronger than you think, despite feeling so tired and weak most days, simply because you choose to keep show up on those hard days.
...always planning around how you feel, having to work around what you eat, how much energy you will expend, where the bathrooms are, etc. It's being hungry, but being too afraid to eat. It's not about your preferences, but about survival for your body and your overall health, because if you don't plan accordingly, it can wreck your whole week {or longer, depending on your choices and the status of your disease}. It's often having to change plans, decline foods, or simply say "no" to the things you love.
...constantly having to advocate for yourself. Whether it's with doctors, insurance companies, or pharmacies, there is always a fight for better care, coverage, or treatment. It's trying to get all of your doctors to talk to one another so you get comprehensive care, and not just a bandaid to treat a symptom. It's spending countless hours on the phone with insurance, fighting to get them to honor coverage for expensive treatments that they don't understand or care to pay for. It's trying to fight for your mental health and keep stress levels minimal through it all. It's hoping that this treatment will be the one that will put you in remission...and that insurance will cover for as long as possible before you have to switch again.
...feeling the defeat of disease, walking the long days of sickness, praying for healing. It's looking "fine," but knowing your body is literally fighting you. But it's also finally finding a treatment that works, achieving remission, and starting to feel more like yourself again. It's knowing that you will live with this awful disease for the rest of your life, but being thankful for the advances that have already been made in the 14 years since your initial diagnosis. It's feeling the discouragement of chronic disease, but feeling thankful for the support of family, friends and the right medical team. It's knowing that your body is broken, but also being grateful for how the Lord has faithfully walked with you in every aspect of your disease.
...chronic pain. fatigue. inflammation. weight loss. flares. brain fog. joint pain. diarrhea. nausea. hair loss. migraines. doctor appointments. constipation. vitamin deficiencies. colonoscopies. bloodwork. endoscopies. anemia. ulcers. self-injections. insurance denials. a nightstand full of pills/vitamins. knowing where all the bathrooms are wherever you go. loose-fitting clothing to put the least pressure on your gut. having "safe" foods in your bag. living through the flares and fear and fighting through anyway.
