It Gets Better: 10 People Living With Ulcerative Colitis Share Words of Wisdomby Jackie Zimmerman Patient Advocate
Navigating a new ulcerative colitis diagnosis or a returning flare can often feel hopeless and frustrating. I know that when I was at my worst with UC, I didn’t know if I would get better or ever feel “normal” again. I have since learned that sometimes that’s all we really need — to just know that things will get better. I reached out to some of my friends, who also live with UC, so you can hear first-hand that you can and will see better days. Here are some of their best pieces of advice.
"It's hard, and sometimes nearly impossible, to feel gratitude in moments of struggle, but see if there are a few things that you can feel thankful for. Maybe your family and friends. Maybe your medical team for their drive to find solutions for you. Maybe something as simple as a comfortable bed to rest in. Finding things to feel thankful for can take your mind off the hardships. Try to remember that a bad experience need not be the only experience you'll face from here on out. Things can and so often do get better."
— Rasheed Clarke, UC patient since 2008
Keep Moving Forward
“Every minute, every hour, every day that passes brings you closer to your goal. Closer to healing. Closer to living. Stay strong, fight hard, and look forward to tomorrow! Your journey starts with the first step. Be brave. Keep moving.”
— Sarah Henning, UC patient since 2007
You Are Not Alone
“You’re not alone. Technology and social media (along with local support groups) make it easy to connect with others willing to chat and who can relate. When you’re ready, go online and see what you can find, but always know that advice from your doctor and healthcare team should be prioritized. I use social media for support and relationships and not so much medical advice.”
— Emily Morgan, UC patient since 2008
Never Stop Fighting
“Things can and do get better. I suffered for years and I never thought I would get to a point where my day-to-day life wasn’t unbearably painful. Yet here I am, in remission, thanks to my hospital and medication. Keep fighting and trying different things to improve your health, as one thing that might not work for someone else could work for you!”
— Rebecca Allan, UC patient since 2016
“I won’t lie and say you won’t have days when your body can’t do what your mind and spirit want, but I can share some advice. Most people who are successfully living with this disease are too busy doing just that — living — to mislead or frighten you, or demand your sympathy. UC has taken a lot from me, but it’s also made me stronger. Negativity is an easy trap to fall into, but this ‘invisible’ disease has made me appreciate that everyone is living with something, and it’s your choice how you deal with your situation.”
— Colin Harris, UC patient since 2006
Take Care of Your Mental Health
“UC is a really complicated and isolating condition. Go easy on yourself, and don’t forget to care for your mental health, just as you would for your physical health. It’s OK to feel. It’s OK to get down, but don’t allow your condition to keep you down. You are a warrior; fight on.”
— Shawn Bethea, UC patient since 2010
Use Food for Fuel
“Pay attention to your body and go easy on yourself even though you might feel like your body is betraying you. Take time to rest. Ask for what you need. Fuel your body with the nutrition it needs — gluten, grains, dairy, soy, and added sugar can cause gas bloating and abdominal pain, which is the exact opposite of what you want when dealing with an inflammatory bowel disease. Quality nutrition contributes to both gut and brain health. Fuel yourself wisely!”
— Maria Thomas, UC patient since 2013
You Are Extraordinary
“Life with ulcerative colitis may not be what you envisioned for yourself. However, that doesn’t mean you have to settle for ordinary. You can do hard things; you can do extraordinary things. Your achievements will be hard-won, but they will be all the more satisfying for it."
— Amber Tresca, UC patient since 1989
Find an Outlet
“When I was first diagnosed, I lived with eight other girls, and yet I felt alone — until I began to share my story on my blog. To anyone struggling, I can’t say enough how beneficial it is for your mental health and social life to share your experiences with IBD. If you’re a writer, write about it. If you’re a musician, compose a song about it. Not only will it help you accept this new life, but it’ll show others and yourself that it, too, can be beautiful.”
— Jenna Ziegler, UC patient since 2014
Ask for Help
“The biggest mistake I made when first diagnosed was not asking for help. Even the most independent people need help sometimes. I found that so many of my family and friends were desperate to help me but didn’t know how, and if I’d just let them know I needed groceries or help with laundry, or that I just needed someone to sit with me as I binged ‘Dawson’s Creek,’ not only would I have been better off, but I would have given them some peace of mind too.”
— Jackie Zimmerman, UC patient since 2006
UC can change so many things about your life and flip it upside-down over and over again. To get through it, you’re going to need help from your loved ones, support from your community, and great advice from other patients who will understand you the most. You’re not alone in this, so reach out when you have questions or need support. We’re all rooting for you.
[Quotes have been edited lightly for length and clarity.]