Dear Fellow IBD Ninja... An open letter to the newly diagnosed.
Being diagnosed with an incurable chronic illness is scary. There are a lot of things I wish I’d done differently when I was first diagnosed. There are a lot of things that I wish someone had told me when I was first starting out on my disease journey. Please allow me a few paragraphs to share with you some very important things I think you should know as you live out your first few days, weeks, months or even years with your disease.
- You are not your disease. You have a disease. Please hear me out! Sometimes it’s hard to separate who you are from your illness. Find your identity apart from your illness. You are going to feel like a burden on others. You are going to feel like you’re lazy or even crazy sometimes. But what you need to know is that YOU are not a burden. Your disease is. You are not lazy, you are battling a disease. You are not crazy and you really are sick.
- People will not understand your battle… don’t waste your breath trying to explain yourself if the person isn’t going to even try to understand what you’re going through. It’s sad, but it’s the truth. Not everyone will be gracious about your disease. In those instances, I say move on. You will never make everyone understand and apart from being up-front and honest with them, there’s nothing more you can do. Some people just won’t listen.
- Have a good relationship with your doctors. There are both good and bad doctors out there. You want to make sure you find a doctor you can trust and will listen to you if you are uncomfortable with a certain treatment plan. Be kind. Be respectful. Be your own advocate. Know that your doctor is not perfect and has bad days just like everyone else.
- Realize that everyone’s battle is different. Crohn’s disease and ulcerative colitis are very complex diseases. No two stories are the same. Finding the right treatment plan for you may be easy… but it may also be a matter of trial and error. There is no one set treatment plan for everyone. Be cautious of herbal and home remedies. Do your research. And remember, despite all the crazy risks with medications or horrible side effects that may or may not happen, your doctors are monitoring you closely and have your best interests at heart.
- Get support. I was very naive at first. I thought I’d be just fine. Just take my pills and be on my way. I was very hurt and very confused when it wasn’t that easy. For three years I battled in silence. I battled alone… and finally, I went online and started connecting people. Social media can be a powerful community of support. Use it.
The most important thing you need to realize is that you are not alone. Help is out there. This disease will rock you to your core. You can either let it make you bitter, or let it change you for the better. Don’t let it defeat you. Let it be something that will make you stronger. Don’t ever give up. And always remember that you have an army of IBD Ninjas standing behind you, cheering you on and lifting you up when you have really bad days.
Amber (aka Colitis Ninja)