Sharing My Story: Part Three
I could go on and on with the surface level stuff of my story. The events that were hard but only lasted a few moments. The certain stories that I learned from quickly and could easily see the fruit. But that’s not real life. I wish I could say the moments in celiac are always short lived with redemption right around the corner, but it’s pretty close to the opposite. So, in my new journey of being real, vulnerable, and honest, I must let you in on the longer, harder, and more intense moments with celiac disease. The moments I felt trapped in my disease. The paralyzing moments of fear mixed with utter disappointment.
There was blood. Not just a little bit, but a noticeable amount and with every visit to the restroom. The trips were frequent and urgent. Painful and uncomfortable. At first I thought it was something random that could be waited out. So, I did not let anyone know and tried to go on as normal. After each visit, I got more and more used to the sight and began to shrug my shoulders. But after a month, I knew it was not normal and I could no longer hide it. My body began to show odd signs that others began to notice. Even if I tried, I couldn’t cover it up anymore. I confided in my mom and we set up an appointment. On the way to the appointment, I geared myself up for the usual. A three minute conversation relaying my symptoms followed by advice to drink more water, get more sleep, and refill my anxiety medications. Wasted time and money on something I could have just googled or toughed out. I was so used to hearing the phrase, “Well, everything looks normal.” Since 2014, each visit to the doctor had this rhythm. They never seemed to know what was wrong with me which always made me feel unseen and insecure. So the morning of this appointment, it took everything in me to get in the car to hear the exact same thing I always hear.
To my surprise, this doctor was different. He looked me in the eyes as I told my symptoms. He nodded along and waited to record any notes until l was finished. He had genuine concern. I had gone to the appointment alone, and as I tried to hide my fear and pain, I could tell it was plastered on my face and body. I was weak and my symptoms were oozing out. For the first time in my life, I was referred to a specialist.
The following weeks, I met with a GI specialized in my city. Now I know it’s counterintuitive to go to the doctor hoping for something to actually be wrong, but once I was referred, I craved an answer instead of an all-clear. In a way, further testing calmed my heart. Upon the arrival of this appointment, again, I felt seen and hopeful for the procedures and tests to come. The tears that flowed on my drive home were different. These were tears of relief and hope.
I was scheduled for a scope and an intense panel of blood to be drawn. Both of which made me extremely sick during the preparation and recovery. The best I could do was lay on the couch nearest to the restroom. While patiently waiting for the results, I caught up on my Netflix baking shows and stack of books I had been neglecting to read. When I received the call, it stopped me in my tracks. A disease? A life-long sickness? A new identity? But, an answer.
After the diagnosis, I called all of my closest friends and family. I wanted to find someone else with this disease. Someone else who could tell me what toothpaste to buy, an effective face wash, safe dish soap, reliant deodorant, yummy ketchup, and friendly restaurants. Someone else who had done the procedure and reaped the benefits. Someone else who was a few steps ahead. To know that I would have plenty to eat. To know the label wouldn’t define me. That I wouldn’t be spending millions on products and groceries. That I will still have a social life. And that I can live without pain.
There was no one. Not a single person that I knew and not even a friend of a friend who had this disease. Again, I was alone and marked. I was going to be different. I was going to stand out and be a burden. I wasn’t going to have anything to eat or any other voice to speak truth into me. So, I did the only thing I knew how to do. I put my head down, did my own research, and glued on a mask so that everyone saw a smile instead of a fluttering heart.
