Spring Break: Chronic Illness Edition

While all my fellow AU Wonks were on their relaxing and exciting vacations to the warm, sunny coastal states, this spring break, I got to go home to chilly Northeast Ohio to visit my team of doctors. It was so much fun to spend so much quality time with my buds in sterile doctors offices, in fact, it was so much fun that I want to publicly share my experience this spring break. 

Before I divulge all of the juicy details of my adventure, there is an important question to be answered: what are chronic illnesses? According to the Center for Disease Control, they are conditions that last 1 or more years and require continuous medical attention or limited activities of daily living or both. There are differences in definitions depending on who you ask and differences on what illnesses are included in the umbrella of ‘chronic illness,’ but around 133 million Americans are affected by chronic illness, and I am one of them. 


Monday is my only day without a doctor appointment. My only day to sleep in. My only day to have fun. But I had to make sure to stop all eating and drinking at midnight for tomorrow’s adventures. 


7:00 am: I wake up hungry and thirsty without being able to quench either feeling. 

8:00 am: I have a gastric emptying test at my local hospital. This test has been my absolute favorite so far because they forced me to eat scrambled eggs with nuclear medicine in it even though I'm vegan! I was almost able to go five years without having to experience the disgusting taste of eggs. 

9:00 am: I’ve been sitting in the waiting room for an hour trying to fall asleep in uncomfortable hospital chairs and my head resting on my mom’s shoulder. As soon as I am dozing off, the doctor calls me back to take a fancy picture of the food digesting in my tummy. 

10:00 am to Noon: Repeat three more times while trying not to throw up after eating eggs for the first time in five years. 

Noon: I have to leave without knowing my test results because it takes 3-5 days for them to be read and analyzed. 


1:00 pm: I go to the rheumatologist because apparently, I have arthritis at 19-years-old. The arthritis doctor asked me why I was there. My tone is annoyed and confused, “I don’t know the hematologist sent me here.” The doctor proceeds to look at my chart and excitedly exclaims, “Oh, you tested positive for lupus!” The only two things I know about lupus is that Selena Gomez has it and that it’s not good. 

1:15 pm: I leave the Rheumatologist with no additional information or diagnoses, just the terrifying thought that I might have lupus or another auto-immune disease. 

1:30 pm: I go to a lab to get a million vials of blood taken for the arthritis doctor to double check if I have lupus or not, but my insurance doesn’t cover $500 of it, so now I’m 500 dollars in debt.


11:00 am: I go to the hematologist because I’m anemic. The nurse tells me I have little veins as she stabs a needle into them. She takes another million vials of blood. When my blood starts to drop more slowly than needed, she takes the needle out and stabs me again, this repeats until she gets the blood to flow normally, but damn, my arm sore now. Luckily my bandage for my battle wounds is pink. 

11:30 am: I still haven’t seen the hematologist despite being 15 minutes early to my appointment. I wait and make small talk with all the other old ladies sitting with me. 

Noon: Finally, I see the doctor. He says a bunch of medical words about my blood that I can’t even begin to comprehend. Then he asks about how heavy my periods are because, apparently, if your periods are too heavy you can have iron problems. Finally, he tells me to keep taking the same dose of iron supplements that I am already taking. So I asked, “What is my iron level today?” He responds, “Oh, I don’t know yet but I assume it’s still low and I’ll see you in May.”

In the end, I waited an hour to see this doctor only for him to not know the answers to my questions and to tell me to keep doing what I have already been doing for months. 

2:00 pm: I go to the dentist for two appointments in a row because I have a lot of cavities. Every time I leave the dentist I feel worse than when I arrived, but at least I get to watch HGTV while three ladies have their hands in my mouth. I keep telling the dentist that I need my wisdom teeth removed and they continue to give me recommendations for oral surgeons that are not in my insurance network. 


7:00 am: I wake up hungry and thirsty, but not be able to quench these feelings, yet again, because I had to stop eating and drinking at midnight last night. 

8:00 am: I go to the same hospital as I did on Tuesday but for a hida scan this time. This is the second hida scan that I have had in the last year. Before the test, they insert nuclear medicine into my veins, the same veins that have endured two blood draws this week. This test is only two and a half hours, but I have to lay flat on my back, in silence, without moving. 

8:45 am: After 45 minutes, they had me drink a protein shake with milk in it. This is the first time I have drank dairy milk in 5 years. As I lay back down for the remainder of the test I try not to throw up because I HAVEN’T DRANK DAIRY IN 5 YEARS. I am alone, in the dark and suddenly I start to panic about the possibility of choking on my own vomit while I'm stuck lying flat on my back for the duration of the tests. Luckily, I fell asleep before I had a full-fledged panic attack and woke up alive. 

Did I go to the beach once? Nope. Did I get to experience warm weather? Not yet. You may be thinking, "Aren’t you, at least, healthier now after seeing all these doctors?" Well, the worst part is the answer to that question is also no. They still don’t understand all of my chronic illnesses, thus they can’t treat my chronic pain. When I go back to Ohio this summer it will be back to square one and back to a million doctors. 

This is not just my experience, but this is also the experience of many people with chronic illnesses. I am lucky that I have a supportive family and decent healthcare because if I didn’t, I cannot imagine how I would go through all of this stress. If you are healthy, be grateful. If you have a chronic illness or a disability, I hear you, I believe you and we can get through this together.   

(Photo credits: 1, 2, 3, 4)