Dear Newly Diagnosed Patient,
Hey, nice to meet you. I’m Jackie and I’ll be your UC spirit guide for the start of your journey. As a veteran patient myself, I have a few nuggets of information that I’d like to share with you because chances are things feel pretty overwhelming right now. I remember what that was like. I didn’t know anyone with UC and I didn’t know anything about it. I just knew that I was miserable, in pain and it felt like it would never stop. Well I’ve got good news…it can and does stop. The bad news is it could start again but don’t worry! We’re going to walk through this together.
First thing is first, go find yourself a great GI. I’m not talking about whatever GI just so happened to be free the day you made your appointment. I mean do some research in your area by talking to other patients and find out which GI will take the time to get to know you and treat your disease. This is so important and can really change your entire experience with UC.
Next, go find some support. We live in a great time for patients because there are so many ways for us to connect with each other. This list of organizations is a good place to start but there are so many Facebook groups, forums, support groups that you can find, and I mean it when I say it, this will be the single most important thing that you do for yourself. Finding groups of people who I could identify with, who could share advice and just relate to me, was an absolute game changer. If you’re lucky your friends and family are standing by your side right now, but they will not always be able to relate to you. Go find your people. You don’t have to do this alone.
Before you go diving into the great white internet, just remember that not every story or experience you read will be your experience. What I’m trying to say is that in your journey to find support, you might find a lot of negative things or scary things but just remember that everyone is on a different UC journey. Some people live with mild UC and have very normal lives while others (like me) have their lives flipped upside down and every possible scenario in between. So go out there and find your support, and educate yourself along the way, but don’t let it scare you. Because here is a secret: Even those of us who have had the worst experiences with UC, still came out the other side. Sometimes it feels like I went to hell and back…but I still came back and you will too if that ends up being part of your journey.
It’s possible that you’re the only person in your family or life that has UC so you’re just trying to learn everything you can while trying to stay healthy. It can be a heavy lift, but learn everything you can. Read articles, ask questions, learn the facts because there is a lot of misinformation out there and there is no sense in anticipating the wrong things. The more educated you are about your disease, the easier and more natural it will be to educate other people in your life. If you cringed at the idea of telling other people…I feel you. I hid my disease from everyone until I was too sick to handle everything on my own. Telling people is your choice, but I really do recommend telling people in your life and giving them the opportunity to support you. Living with UC can be really isolating, which you probably already know, so give those who love you a chance to keep you involved in the world. It may be hard or embarrassing but you will be surprised at how many people just want to help you regardless of why you need the help.
There are so many more things I feel like I could tell you but you’re already in a good place for information and support. Take some time to read the articles on Health Central, reach out to the organizations I mentioned, join a few groups and if you’d like to you’re welcome to contact me.
It’s been 9 years since I was diagnosed and while there were a few bad years in there, there was also some really amazing and unforgettable moments too. This journey is all about perspective and attitude and the good news is that you are in control of both of those things, even when you may not be in control of your body. And on the days when you just feel out of control of everything, your community is here for you. Lean on us. I’m sorry that you’ve had to join our club, but believe me when I say you’re in good hands. We’ve got you.
We’re in this together,