What is 'Flare Fear' When It Comes to UC?

If you live with any chronic illness, you’re probably familiar with ‘flare fear.’ Because it’s exactly how it sounds: it’s the fear of another flare impending on your life. I’d bet that the worst moment of flare fear is when your doctor declares you in remission once again. You’re exhausted, emotionally drained, and you’ve likely dedicated every last ray of hope to this moment. At least that’s how I go through flares. I do what I can and quietly await the moment of a clear colonoscopy. Then when it comes, you realize you’ve been holding your breath for the last several months in anticipation.

You can finally exhale. You’re in remission!

But then the inevitable hits. It’s that deep pit in your gut (pun intended), that feeling of waiting for the other shoe to drop. This moment feels so good … but for how long? 

When will I flare again?

I see you, and I get it. I used to let that fear absolutely devastate my ability to enjoy being flare-free. There are so many things in my life that I love doing when I’m feeling really good. Hiking. Running. Swimming. Seeing friends. Drinking coffee. Going for walks. All of these things are literally my favorite things, but after I got out of that first really bad flare, I spent more time worrying about and waiting for the next one that I forgot to actually appreciate and enjoy that things I like most. It’s a hard balance, right? As people living with chronic illness, we want to enjoy the good days, but it’s also impossible to shut off the nervous anticipation for the next one.

I’ve lived with UC for more than 20 years, so I like to think I’ve learned a thing or two about how to manage both feelings of freedom from UC and feelings of being imprisoned by UC. At the day of the day, it’s more important for me to live in the moment of each day, but that took a lot of therapy to be able to get to that point. Here are some tips I’d like to share:

1. Let go of control. This is a daily practice for me, but every day I remind myself that control is an illusion, and none of us can control our disease. I literally say that to myself every day.
2. Live in the actual second. Not the hour, not the minute. Live in each second that you’re in. This also comes in handy as a new parent!
3. Accept what is, and accept what isn’t. What is is that a flare might come again. What isn’t is that it definitely will come again. There’s a difference. 
4. If you’re currently flaring, pick one activity that you enjoy and are able to do right now. For me, that was always binge-watching my favorite shows or reading a book. Pick one and do that every day. 
5. Consider therapy. I wouldn’t be here without it. 
6. When the fear comes, feel it, then let it pass. This might look like crying, journaling, self-talk, calling a friend – whatever it is for you, let yourself feel it. Don’t avoid it.    
7. Plan time every day to bitch out UC. I like to give myself a dedicated 30 minutes each day to throw a pity party. That way you can get it out regularly, but you can also allow yourself to enjoy the other 23.5 hours of the day. 
8. Be gentle with yourself. Living with UC is really, really hard sometimes. You’re doing a great job.
9. Find a UC community. I’ve lost count of how many times I’ve called a fellow UC friend in a crisis about my own condition, especially when hard testing is going on. They get it, and they want to be there for you. 
10. Write a love letter to your body. It’s going through a lot, and it’s easy to get mad at it and dismiss its power. But believe me, it’s working overtime to help you.

Of course, this is all easier said than done, and it won’t happen overnight. It takes ongoing practice to find the joy in the days between feeling sicker than sick. I totally get that; I’ve been there. And if I can find meaning in every day of my life, you can, too, even when it feels really, really hard.