How autoimmune disorders almost derailed my medical training

Some families have a multigenerational legacy like medicine or a family recipe. I love seeing that restaurant plaque that proudly states, “family owned for the last 50 years.” My family’s legacy is autoimmune disease, and to my knowledge, they don’t hand out plaques for that.

In my third year of medical school, my mom passed away from lupus. If you have lost a loved one, my words will fall short. After my mom’s death, I was a hollow and helpless core wrapped in deeply rooted anger. I felt I had no sense of direction, nor the will to find it.

On the outside, I remained a devoted medical student. On the inside, I was struggling with feelings of sadness and anger. Despite my best efforts, an exceptionally perceptive preceptor picked up on my inner demons and commented on my awkward timidity during an evaluation.

Fearing what would happen if others truly saw what I was going through, my resolve to fine-tune my facade only intensified. While I do not recommend this approach, my denial held strong into my first year of residency … until it didn’t.

‘I cannot get enough air’

I will never forget the first time I couldn’t breathe. I had noticed smaller symptoms, but I had assumed it was intern year fatigue. This was different. This was full on, “I cannot get enough air into my lungs, and if I don’t, I will pass out.” The first real episode happened when I was the first assist during a C-section. We were closing, the hard part was over.

I could hear and feel my own heartbeat. My lungs seemed full, but screamed for more oxygen; my own review of systems was positive for chest pressure and diaphoresis. I remember thinking that the lights were getting dimmer. My only thought was, “I am either having a panic attack or heart attack.”

I told the OB/GYN I would have to step out and an eager medical student was more than happy to get closer to the action. I scrubbed out and proceeded to the locker room where I sucked in more air than seemed reasonable.

A few doctors, a misdiagnosis of pneumonia, a couple rounds of antibiotics, some imaging, and a lung biopsy later, I learned I had sarcoidosis. I was happy it wasn’t lymphoma.

Many people with sarcoidosis have no symptoms and don’t require treatment. I am not one of those people. My symptoms worsened. I had no energy, my joints hurt, skin lesions developed, and I found out that my body was a rock star at making granulomas.

Again, the all-too-familiar emptiness overcame me. I worked even harder to keep it hidden behind my time-tested facade of “OK-ness.”

In some ways, the pandemic helped me. Everyone was having a hard time, and this allowed me to let my guard down, even the smallest bit. I no longer had to work as hard to pretend to be OK. I suddenly wasn’t alone in my discomfort, and that brought comfort in a twisted misery-loves-company sort of way.

My daughter’s diagnosis

Still, my determination to appear that I was doing fine remained steadfast until a third autoimmune disorder presented in my family. In February 2020, my 5-year-old daughter, Adalyn, was diagnosed with Type I diabetes. I didn’t realize until we attended our annual daddy-daughter dance, when we went to the bathroom three times in two hours, that something was off.

My daughter has always been special, but to see her facing this challenge head-on was truly something to behold. I had simultaneously never been prouder, nor more scared, in my entire life.

Suddenly, the house of cards came crashing down. My facade was no longer my ally; I was no longer able to hold back the dam of emotions and frustrations. I cried in front of my program director, program coordinator, co-residents, and random people that innocently asked how I was doing. Everyone, finally, saw my fragility. It was at this time, at my most vulnerable, that I discovered I was not alone.

It was time to let all the people around me share in my burden. It is often said the becoming a physician is a sacrificial endeavor. I wholeheartedly agree, but you cannot sacrifice what you do not have to give. I began to ask for help, and we received support not only from my residency, but also from the entire community. This allowed me to begin to heal.

In my time at A.T Still University Kirksville College of Osteopathic Medicine, I learned that the first tenet of osteopathic medicine is that the person is a unit of body, mind, and spirit. This is something we were literally tested on. Yet I failed to apply it to my own life.

Realizing what matters most

I thought I was the exception to the rule and did not realize the significant harm I was doing to myself by suppressing my emotions. Today, I understand that it is OK to not be OK. Asking for help is allowed, and I don’t need all the answers. In my case, it took my daughter to help me see what mattered. To me, what matters most is faith and family.

I recommend that all medical students and physicians take some time to consider what matters most to them. If you don’t know, it’s time to find out. And please know that the world does not rest solely on your shoulders.

Today, my sarcoidosis is in remission. Adalyn continues to be a symbol of strength and resilience. We recently attended the Friends for Life Diabetes Conference in Orlando, Florida, as a family.

My career in medicine has been one hurdle after another. I would love to share some dazzling words of wisdom about how I’ve gotten through. However, I am honestly still in the process of figuring it out.

Some days I wake up and choose to face my demons head on. Other days, I wake up in the fetal position and think, “I won’t make it through.” This inconsistency, this uncertainty, is what makes me human.

These challenges shape me, they do not define me. While I am a husband, father and physician, I am, above all else, a human.

Related reading:

What physicians need to know about sarcoidosis

The life cycle of emotion in medicine

How I made med school work without cell service or Wi-Fi