I was diagnosed when I was 22 years old. I was bombarded with information from doctors, the Internet and even advice from people I barely knew. It was a scary and depressing time for me. I was in a new relationship, I had gone through months of testing to finally get my diagnosis and then had to come to terms with knowing there was no cure. There was no “pill” I could take to get me back to feeling well again. Even though each individual experience can vary greatly with Crohn’s disease or inflammatory bowel disease (IBD) in general, there are a few things I wish I knew or at least heard when I was diagnosed.
1. You are not alone.
Reach out to other people with IBD. There are plenty of forums that can connect you to people around the world who understand what you’re going through. This may take time as you adjust to everything that is going on, but I have found a support network is the best tool I have in dealing with my disease.
2. Don’t be afraid to say no.
There will be times you are too sick or tired to deal with people, events and sometimes life in general. Take a time out and relax and don’t feel bad for turning down plans.
3. Stay informed.
Go into your doctors’ appointments with questions and write down answers. Keep in the loop about drugs and research. It’s your body, and you need to stay informed with what’s going on so you can make educated decisions with the aid of your family and medical professionals.
4. Keep setting goals.
I thought my life was over when I was diagnosed and believed I would never accomplish any of the goals I set before my diagnosis. There are periods of flare-ups and remission. Reaching your goals is still possible — don’t give up!
5. Communication and planning is key.
When you’re not feeling well, trips out can still happen with some planning (usually around bathrooms) and letting the people you’re with know you’re not 100 percent. It may take time to let people close to you know about your disease, but I have found a great group of friends who have stuck by me in sickness and health! There are times I have ditched out on plans or left events early, but they have always been supportive.
Follow this journey on Crohnie on the Go.