When I first heard the words “You have Crohn’s disease,” some pretty obvious questions popped into my head: “What is this going to mean for my life? Will treatment work? Can I keep my job? What changes do I need to make?”
Now I see that all of these questions were about logistics. I was so swamped with the medical management—appointments, prescriptions, blood work, vaccinations, diagnostic testing, phone calls to my insurance company—it never occurred to me that I might face emotional challenges on top of everything else.
I remember thinking repeatedly, “This isn’t the life I want to live. I didn’t ask for this. I don’t want it!”
The Loss of My Healthy Life
I felt forced to focus my energy on the clinical chaos before me. But, soon enough, my brain and my body started fighting an all-out war over what I needed to do and what I actually wanted to do with my time.
Perhaps the biggest surprise was what the emotional toll of that war ended up looking like. I didn’t know it at first, but I was suffering the loss of my healthy life. I went through all the classic stages of the grieving process: denial, depression, anger, and eventually made my way to acceptance.
I Felt and Looked Like I Was Dying
I tried denying that I had IBD towards the beginning of my diagnosis. I didn’t want to tell anyone, because I felt like if I didn’t talk about it, that meant it wasn’t real. Plus, I was afraid to mention it to my boss for fear I would become emotional saying the words out loud.
Well, then the disease reared its ugly head, so I had no choice but to face facts.
I had sunken-in cheeks, dark circles under my eyes, and an extremely sallow complexion. My body ached down to the bone. To me, I felt and looked like I was dying. Enter depression.
A Cycle of Depression and Anger
I thought I would never get better and that I would be in constant pain and misery. There were times when I wanted to give up. I felt like a burden at home and unreliable at work.
Sometimes the depression would shift into a level of anger I didn’t know I was even capable of feeling. There were a few outbursts at home that resulted in a flood of tears and (I’m not proud to say it) a number of broken objects. I became furious at the rest of the world for taking everything for granted.
For a generally positive, happy-go-lucky person, these feelings were foreign to me. I wasn’t used to carrying around that much emotional baggage. Needless to say, I didn’t like it, and I judged myself for feeling the things I felt. It wasn’t me.
Educating Myself as a Way to Cope
In hopes of regaining some control, I devoted all my free time to researching Crohn’s disease. I’m not going to lie: When I first heard people’s personal stories about trial and error with different medications and about surgery, it felt like someone had knocked the wind out of me. It was sobering to learn about all the possible complications.
However, in order to cope, I needed to know. I wanted to prepare myself for curveballs down the road, following the mantra of “knowing is half the battle.” Even though it was a rude awakening, I realized this was helping me build my mental fortitude, which put me on the path to accepting my new life.
The Slow Path to Acceptance
I’ve learned throughout this adventure with IBD that my emotions tend to fluctuate based on what’s going on in my body. If I’m experiencing a lot of symptoms, my emotions are all over the place. I’m fine one minute, disappointed at myself the next, relieved when the symptoms let up, then angry when they come back with a vengeance.
Admittedly, it can feel like I’m going crazy when I run the entire gamut of emotions within a matter of hours. Even so, I’ve found it’s simply a normal human response to living with a chronic illness.
I’m currently four years post-diagnosis, and I’m still on the ride of my life. It’s an ongoing process. With each flare-up, I notice those old familiar feelings coming back and think, “Oh boy! Here we go again!”
But I know now that it’s all just a part of the healing process: My mind needs to rehash certain feelings in order to cope with what’s going on in my gut. So I try to be understanding and kind towards myself, instead of being judgmental or hard on myself for simply reacting to the situation.
While everyone’s journey will look different, I’m pretty sure it will never be a linear path. I’ve found that it helps to consider the journey one long roller coaster ride, because there are going to be twists and turns and ups and downs. Take each one as it comes. Remember, we’re only humans doing our best to overcome. That’s really all we can do.