When I was diagnosed with ulcerative colitis, a form of inflammatory bowel disease (IBD), during my senior year of high school, I didn’t understand it. I didn’t understand what my condition was or the effect it would have on my body, internally or externally. I never stopped to think, “What does it really mean to have IBD?” Instead, I was just in a hurry to get back to school, get back to tennis and my friends — to get back to normalcy.
As time passed, I quickly realized there would be no such thing as normalcy. Steroids caused weight gain. Weight gain caused low self-esteem. Colitis caused blood loss, anemia, and so much more chaos in my body.
I no longer had faith in my body to do the most basic things, so I chose to isolate myself. I did things when I had to, but otherwise, I was somewhere in hiding. Somewhere safe and familiar. Somewhere with a bathroom and more than enough meds stashed away just in case.
I remember my high school graduation. I knew my graduating class was rather large, so I came up with a plan. I scoped out the exit doors during rehearsal. I told myself that no matter what, if I needed to run out, I wouldn’t come back. I prayed I wouldn’t have to use this evacuation plan. I wished for just one day my body could do the right thing.
And it did. I was able to sit through the entire ceremony. I survived.
Living in survival mode with ulcerative colitis
From that day forward, I continued to make similar plans. Plans that allowed me to survive with ulcerative colitis, one day at a time.
I lived my life scoping out exit doors, avoiding road trips, and arranging, then re-arranging, doctor’s appointments and medications. I chose the earliest schedule at work — I’m actually not a morning person, but this allowed me to avoid being in public during nightly urgency scares and flare pains.
This was no life to live. It’s not a life I’d wish on my worst enemy. I was miserable — doing just enough to get by. Much like during my graduation ceremony, I was simply surviving rather than fully living.
Eventually, as anyone would, I got fed up with being safe. I no longer desired to hide in the shadows of IBD. I wanted more for myself, so I came up with a plan, but not like the ones I’d made in the past. This was something I’d never tried before. I was no longer planning to survive tomorrow; I planned to thrive tomorrow.
5 tips to learn to thrive with ulcerative colitis
To fully live with ulcerative colitis and not simply survive and get through it, these are the five main steps I followed.
1. Make a list. Check it twice — seriously. Make a list of things you hope to accomplish. Whether it’s in your professional or personal life, whether you’re looking to start a family or training for a marathon, add it to the list. Write down where you hope to be health-wise in a year. When you’re feeling distraught, refer to this list. Remind yourself of your dreams and exactly why you’re fighting so hard.
2. Tell someone you trust. Show a loved one the list you’ve created for yourself. You’re going to need a support system. These people aren’t only good for rooting you on; they’re also the ones to hold you accountable when the road to recovery becomes rocky.
3. Tell your doctor. Let your doctor know about the goals you’ve set for yourself. Tell them where you’d like to see your health over the next 12 months, then ask about the best strategy to get there. Become a partner in your own health care.
4. Do your research. Find credible sources and use them to learn more about your condition. You don’t have to be a doctor to be knowledgeable.
5. Start small, and do the scary thing. Becoming an empowered patient is only half the battle. Fight for better days, but don’t waste the ones you do have wishing them away. I know it’s hard, but I also know there are things you want to do other than spending that lovely quality time with your doctor. It doesn’t matter where you start. If your goal is to run a marathon, but you can’t quite make it that far yet, start by running to the mailbox. Any progress is good progress!
There’s no one way to navigate life with ulcerative colitis. There’s no guide showing the “rights and wrongs” of chronic illness. It’s all about pushing through and learning from your experiences. Use the pain to empower your fight for a better life. Give yourself permission to be imperfect, to fall and get back up.
Give yourself permission to live — truly live. You deserve it.