IBD is hard and it comes with a lot of baggage: painful symptoms, frequent colonoscopies, and expensive treatments. 

Crohn’s disease and ulcerative colitis (IBD) don’t just affect the physical body though, they affect the mind too. Living with the symptoms of IBD can cause frustration and fear. Remaining silent about these struggles can cause social isolation and feelings of loneliness.

Members of the Patient Advisory Council (PAC) have filmed a new video series - sharing why and how they talk about IBD and encouraging others with IBD to also talk about their disease with friends and family.

Yesterday I felt tired. This concerned me.

I’m used to feeling tired at the end of my Remicade cycle, but I had my last infusion four weeks ago. With four more weeks until my next, I should be at my physical peak. 

It could have been the cold weather, or the rain, or my night of restless sleep. It could be the stress of my two exams next week, or the consequence of running around campus from seven in the morning to nine at night. 

The cause of my fatigue could be any of those reasons. Or it could be the flu.

We speed down the pavement towards Grand Canyon National Park. In a few hours this road will be jammed for miles, but right now it’s empty. The trees stand motionless in our headlights and the air rushes into the car through the open windows and back out into the night. There is a young buck on the side of the road, and his presence only accentuates the stillness of the scenery. We pass the empty ranger station, the closed visitor center, and continue driving to the rim of the canyon. Clouds cover the stars like a nightshade, and only the moon penetrates the veil—it is dark.

It’s 3:00am, and we’re at a gas station ninety miles outside of the park. We’ve been up for twenty-two hours, and been on the road for sixteen of them. I pull out of the station and on to the open road. We roll the windows down and open the sunroof. The air hits my arms and my body shivers at the cold. I stick my left hand out the window and open my palm to the night—it keeps me awake.

The interstate takes us through a Navajo reservation. It’s time to switch drivers, but there are no exits. Daniel slows from eighty and stops us on the wide shoulder next to dark grassland and a wire fence. I pull down the ceiling flap and open the mirror. My eyes are red. Sand from the dunes scratched them up, and the burn of the open windows left me squinting. When I rub them, little tears form at the corners and slide down my cheeks.

The first three hours of the drive are easy. Daniel takes us out of government land, and we watch the sun set behind clouds that drop streaks of rain over the prairie. Although we had already been in the car for nearly ten hours before leaving the dunes, the adrenaline keeps us comfortable. I lean my seat back and put my feet on the dash until it is time to switch. My right hand grips the steering wheel and I rest my foot just above the brake in case my eighty mile-per-hour pace becomes too fast.

I see the sign for “White Sands National Monument” from the passenger seat of the car. These milky white dunes are surrounded by government land used for missile tests and military operations, while the Parks Service protects a small patch in the middle. Entrance is free with our Annual Pass, and we cruise down the road of packed sand towards the far edge of the park. We see families sledding down the hills of sand on circular disks and couples eating sandwiches at park benches. We stop at the visitor center and buy a backcountry camping pass for one night.