“I must not fear.
Fear is the mind-killer.
Fear is the little-death that brings total obliteration.
I will face my fear.
I will permit it to pass over me and through me.
And when it has gone past, I will turn the inner eye to see its path.
Where the fear has gone there will be nothing. Only I will remain."
Frank Herbert, Dune
It is funny how the older we get, the less “scary” the things we fear are. When I was five, I used to be afraid that dinosaurs would march down my street and come eat me and my family. I used to fear the demons in the dark, or the being abducted by strangers. As we grow older, we realize the unlikelihood of these grandiose things we feared as children actually happening. We begin to fear the realistic things we know have hurt us before or that are likely to hurt us in the future. For many of us with Inflammatory Bowel Disease, these fears center on the fear of the unknown. How long will I stay in remission? Is it food poisoning or am I starting to flare? Will my medication be shipped in time for me to take it? Can I live a normal life without my colon?
Sometimes fear comes from the unknown surrounding our medications
These past few years I’ve been afraid of a lot of things because of Crohn’s Disease. I’m afraid to look at the scale in case my weight is dropping. I am afraid to try new foods because I have a lot of food sensitivities. I am afraid of that little sharp pain I occasionally feel in the lower right part of my stomach that might mean my disease isn’t in remission. Fear can be all consuming. It can take a hold of your mind, and suppress any reason or logic that would challenge its grip.
Fear is an instinct, which means we don’t get to choose how or when it happens. I’ve found that fear likes to act in the background. It takes over our mind when we are so focused on the source of our fear that we forget the fear itself. The first step to overcoming fear is facing it. We have to identify and acknowledge that we are afraid.
Once we understand that we are afraid, we must then ask: Why? It is much more than just identifying the source of fear. It is easy for me to say: “I am afraid because the last time I ate pizza I had stomach cramps” and stop there. If I continue to dig deeper, I can come up with thoughts like:
“Am I 100% sure it was the pizza and not something else?”
“Was the last time I had pizza when I was in a flare?”
“Am I in a better position now where things might be different?”
“Did I get a lot of crazy toppings last time? Maybe I can try something simpler.”
“Am I willing to take the risk that pizza gives me cramps again”
Now, instead of fear, there is an informed dialog going on about the situation. It is no longer an emotional reaction, but an analysis of an event. I know the source of my fear, I understand the context, and I can make an informed decision moving forward. Fear may control the “how” or the “when”, but if we take a step back and try to understand the “why” behind our fears, we can overcome.
I want to circle back to the point I made earlier that a lot of the fear in Inflammatory Bowel Disease is of the unknown. There are two ways to learn something, you either do it yourself or somebody else teaches you. These are lived experiences and learned experiences.
One of the best ways to conquer the fear of the unknown is to learn from other people’s experiences. CCYAN consists of young adults who are overflowing with experience when it comes to living with IBD. If you are afraid of how your life will look after an ostomy, talk to a current ostomate. If you are afraid of switching medications, talk to somebody who has run the gauntlet of medications. If you are afraid you are entering a flare, talk to somebody who just got out of one.
It is so easy to feel isolated with IBD, and sometimes it feels like nobody else understands your fears. That is why it is so important to plug into groups like CCYAN and connect with people who can empathize and relate to the challenges and fears we face. You are not alone, somebody understands what you are going through. If we can identify our fears, understand the why behind them, and then connect to people who can remove the “unknown” factor, IBD can be a little less scary.
