When 'Chicago Med' Presented My Rare Disease as Fiction


I am very disappointed in the episode of “Chicago Med” that NBC aired on Tues., February 2, featuring a 13-year-old girl with mitochondrial disease. In this episode, the doctors seem to call mitochondrial disease fiction and equate it to a “wastebasket diagnosis” that doctors give when they have no answers. Before a TV show decides to do an episode about a potentially terminal disease, I think the writers and producers should do a little more research.

The episode started off really realistically. A young teenage girl named Michelle came into the emergency room with bronchospasms. She was convulsing and struggling to breathe. Then, as suddenly as it started, the teenager’s body relaxed and she was able to breathe again. The girl’s father tells the doctors that she has mitochondrial disease. He does admit that he first found out about it by searching online, but he says that the disease was confirmed by a doctor. The girl has a G-tube and central line, so it is obvious that she has been under a professional’s care. The father, like many mitochondrial parents, brings in medical records from the car for the doctors. He says that he carries them everywhere in case of an emergency. This is when the show takes a turn for the worse. A doctor named Dr. Halstead walks into the room as his colleague Dr. Manning goes over the stack of paperwork. They start to talk, and this conversation takes place:

Dr. Manning: “She has mitochondrial disease.”

Dr. Halstead: “Mito? We really are talking fiction here.”

Dr. Manning: “You don’t think it exists?”

Dr. Halstead: “Always felt like a wastebasket diagnosis to me. The doctor can’t figure out what’s really going wrong, says it’s Mito, calls it a day. What’d the muscle biopsy say?”

Dr. Manning: “That I don’t know, because I haven’t found it yet.”

Because of this conversation, the doctors set out to prove that this young girl does not have mitochondrial disease. They decide to — illegally — put a hidden camera in her room. The camera shows that Michelle appears to get better when her father is not in the room. Because of this, they call children’s services and have her taken away from her father and put into the hospital’s custody. They decide that the young girl must have a psychiatric disorder instead of the medical problem she has been diagnosed with.

Mitochondrial disease has few treatments and no cure. A little positive awareness could have gone a long way in helping those of us who live with this disease. Instead, they minimized a condition that has taken so many loved ones away. I do realize that it is just a TV show, but misinformation has the potential to hurt a group of people who already have a hard time being taken seriously.

I personally have mitochondrial disease. It is a cruel and horrible disease. In the early stages of the disease, I was sent to a variety of doctors. My “mystery” symptoms were blamed on everything from stress to my diet. In the last seven years, I have experienced multiple organs failing, I have had to learn to walk twice, and I have spent more time in the hospital than I’ve spent at home. I have had over 20 surgeries. My medical records most likely look like the ones featured in the show. That was almost all before diagnosis. I was diagnosed mostly based on medical history and blood work. I did undergo the type of muscle biopsy they talk about in the show, but it is generally optional. Doctors tend not to recommend the biopsy for unstable patients because it is physically traumatic and can be misleading. Mitochondrial disease is still rare and needs further research, but it is hardly fictional.

After this “wastebasket diagnosis,” I was able to get the correct kind of physical therapy, I was able to get on the correct supplements and medication, and now I can lead a fairly “normal” life. I am extremely lucky. Mitochondrial disease is not a joke or something that lazy doctors came up with as a last resort diagnosis. It is a very serious chronic illness that can affect all parts of patients’ and families’ lives. It can consume your time, and it may seem strange to those unfamiliar with the disease. “Chicago Med” had a chance to support this rare disease community, and I believe they failed miserably.

The Mighty is asking the following: Describe a moment when you were at a hospital and a medical staffer, fellow patient or a stranger made a negative or surprising comment that caught you off guard. How did you respond to it? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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