On a daily basis, Jess Madden experiences two sides of medicine. As a neonatologist with celiac disease, she has the dual identity of being both a doctor and a patient.
At work, she cares for the smallest and newest patients. In her personal life she becomes the patient as she manages celiac disease, an experience she shares on her blog, The Patient Celiac.
The name of the blog is a nod to her double role, but it also refers to her need to be patient while continuing to find her way on the gluten-free diet.
After years of being sick with undiagnosed celiac disease, Madden finally received a diagnosis in 2010. Like many others, she had a lot to learn at the start. Although she thought she was doing well, in 2012 she developed neurological symptoms and realized she needed a more in-depth understanding of the disease. And The Patient Celiac was born.
Madden, who lives in Green Bay, Wisconsin, with her husband, four children and a niece, offers a unique perspective to her blog readers.
She writes about celiac disease research and studies, sharing what she discovers in terms that are easy for her readers to understand. Her quick grasp of complicated topics and her ability to translate information clearly in rapid-fire tweets at the International Celiac Disease Symposium caught the attention of Gluten-Free Living’s editor. Madden subsequently wrote several stories for the magazine.
In addition to the medical side of celiac disease, Madden often writes on her blog about celiac disease and her family. And with four little ones, that means keeping an eye out to see if any of her children develop symptoms.
This Sunday, Madden will add another celiac disease dimension to her life when she runs the New York City Marathon as part of the Celiac Disease Foundation’s Team Gluten-Free. This will be her third marathon, but her first running in the widely-known New York City race.
As she was preparing for the race, Madden shared what a typical day is like for a doctor, mother, blogger and marathon runner.
What time do you wake up?
I wake up between 4:45 and 7:00 a.m. And that just depends on if I am motivated to run or go to yoga before my kids wake up.
What’s for breakfast?
I either eat a bowl of gluten-free oatmeal and some fruit, or I make a smoothie and use whatever I can find in the fridge. It’s usually kale, berries, almond milk, and I’ll throw yogurt in or almond butter. I drink a lot of coffee.
What is your morning routine?
Usually, it’s pretty hectic getting three of my four kids and my niece off to school between eating breakfast, getting dressed and making sure they have their homework. I am getting ready for work, too. Luckily, I wear scrubs to work. The kids are out the door by 7:45 a.m. I leave the house at 8:00 a.m., and my workday starts at 8:30 a.m.
What’s an average day like for you?
I work in a neonatal intensive care unit (NICU). From 8:30 a.m. until about 2 p.m. we do what’s called “rounding.” I go “bed side” and see every baby in the unit. I examine them, make a plan for the day for each one, update the family and write a daily progress note.
It’s broken up because if there is a high-risk delivery or a premature baby being born, we leave the NICU to help out. I do consultations, and then I make a lot of phone calls. Until I leave at 4:30 p.m., I do administrative work, catch up on emails, or I start to read articles on celiac disease.
I work night shifts about six times a month and that’s when I work on my blog. Most of my writing is done at 1:00 a.m. I’ll post to my blog at 3 in the morning and the same with my Facebook posts and tweets on Twitter. The nurses I work with in the NICU are so used to hearing about everything I’m writing about. They have been very involved in the process, too. Some of them help me proofread posts.
When I work at night, it’s not the typical day I just described. On those days, I spend a lot of my time with my 2-year-old. I use those days for catching up on life. The next day I sleep during the day.
What’s for lunch?
Lunch is usually leftovers from dinner the night before. I am really fortunate right now that my husband is doing all of the cooking. If I forget to bring lunch, we have a doctors’ lounge and one of the members of the food services team also has celiac disease and will leave me gluten-free food. Sometimes I get a salad and hard boiled eggs.
Is there anything surprising about your day?
Things can get really hectic at a moment’s notice in neonatology. I never know when a woman is going to come in and deliver a premature baby. It’s an environment where things can change really rapidly. You can have a baby who is fine and gets really sick all of a sudden.
What’s for dinner?
We are a totally gluten-free home. Our typical rotation includes chicken or seafood, enchiladas and pizza.
What’s your favorite part of the day?
My favorite parts of the day are when we eat dinner together as a family and then the time between dinner and getting my kids tucked into bed.
Where do you find inspiration for your blog posts?
It’s twofold. I search a lot on PubMed [medical literature and journals] looking at the recent journal articles. When something catches my eye, I start reading. I also get a ton of emails from readers with questions or anecdotes, which will lead me to do research and write a post. Initially, more of my inspiration was from published journals, but now it’s coming more from readers.
What is it like to reverse roles and go from a doctor to a patient?
Other than when I gave birth, it’s really the first time I have ever been in the patient’s position. That’s been really eye opening about how much room there is for improvement in patient/doctor communication and in terms of determining difficult diagnoses, as celiac disease can often be. I think it has made me much more empathetic with patients and their families.
My blog’s name is a play on words because I try to be patient with things, but I have a tendency to not be. In terms of healing, I do have to have patience.
What has blogging brought into your life?
Outside of the food services team member with celiac disease, I don’t know many people with celiac disease. For me, it’s an outlet. It’s been a way to connect with people all over the world who also have celiac disease. I feel connected to a community I never knew existed.
This weekend you are running in the NYC marathon. When do you have time to train?
It’s all over the place. Some days I get up really early and run. I also have been known to run really late at night. I have a safe route through town, and I wear reflective gear and run at 10:00 p.m. It just depends on if I am working days or nights. I flip the training.
Have you thought about what crossing that finish line might feel like?
I think it’s going to be incredible. I am excited that my body healed enough that I finally was able to get to the point to run a marathon. It’s like I am running for everyone I know and have encountered with celiac disease. I just feel really honored to be able to do it.
(This interview has been edited for length and clarity.)
Susan Cohen is a regular contributor to Gluten-Free Living.