National Health Blog Post Month day 18, hello there. Today, I’m supposed to write advice for someone caring for a patient with my condition. So let’s go. If you want to see what other bloggers have to say on the topic, make sure you’re following #NHBPM on Twitter.
So your loved one has Inflammatory Bowel Disease — Crohn’s disease or ulcerative colitis. Now you’re trying to figure out what to do and how to care for them. As someone who lives with Crohn’s diseaseand happens to have several close friends who do, too, I’ve been on both sides of the coin. Here are the best suggestions I have to offer you.
First things first. I know this is hard for you, too. Whether you’re the parent of a child with chronic illness, dating someone who has it, or your BFF is living with it, it impacts your life too. Maybe you feel guilty. Maybe you even feel annoyed because a lot of plans have been cancelled. Maybe you feel lots of pity for them. Whatever you feel, it’s okay. It isn’t easy being a caregiver, and most of us who are patients know that. Make sure you care for yourself first… and don’t feel bad about doing that!
Especially in the beginning, expect plans to be cancelled often. When a patient is still learning about their IBD, they might be embarrassed, nervous about being in unfamiliar places, and still trying to navigate their new medications and diet. If they change plans at the last minute, be patient. Better yet, if you want to spend time together, ask what they’re most comfortable doing. You may even want to suggest a night of sweatpants and silly movies on the couch.
Ask questions about their comfort level. Are you going out to dinner? E-mail a link to the menu ahead of time and make sure they can find something that feels safe to eat. Ask them how they’re feeling. Be open-minded and let them tell you as much or as little as they like.
Do your own research. If they’re not ready to be open, it’s okay. Don’t push. Read first-hand accounts on blogs, research the medical aspects of the disease, and find out what you can. (You can find my posts about my diagnosis in my Crohn’s & Colitis tab.)
Know that we’re all different. There’s no one answer that applies to everyone with IBD. I hate when people say things like, “1.4 million Americans suffer from IBD,” because I hate the implication that I suffer all day long. Others like it because it recognizes the difficulty they experience. I hate poop jokes. Others love them.
When in doubt, just ask. You know your loved one best. Ask questions, find out their own preferences, and be there for them in the way that they need. It’s okay to ask what that is.
Other posts that could be helpful:
What I Wish You Knew (Forward is a Pace)
A Few Things You Should Know About Crohn’s Disease (Ali on the Run)
Advice for Caregivers (Oak Park Behavioral Medicine)
Saying Goodbye (Run Stronger Every Day)
Do you have IBD? What do you wish caregivers knew?