On Tuesday, February 2, 2016, NBC primetime drama "Chicago Med" aired an episode that received massive backlash from the rare disease community of which I am a part. The disease "Chicago Med" attempted to tackle in this episode is called Mitochondrial Disease (colloquially known "Mito"), a very real, complicated, and deadly disease.
Instead of portraying Mito with any shred of medical fact, "Chicago Med" used Mito as a platform to conduct an episode about medical child abuse medical child abuse. What Dick Wolf (producer of "Chicago Med") may not have realized is that associating Mito with medical child abuse was a huge, ignorant mistake- something that hits way too close to home for Mito families.
Instead of using this episode and research to educate viewers on the complexities of Mitochondrial Disease, they took what little knowledge they had and slapped the Mito community across the face, portraying our disease as fake and making all Mito families look delusional.
First off, let’s have a little crash course on what Mitochondrial Disease is and isn’t. Mitochondrial Disease is a term used to refer to multiple disorders that, in some way, affect the mitochondria’s ability to create, use, and distribute energy to the body.
Because there are a number of things that could be wrong with a Mito patient, it is often difficult to place a finger on exactly how to approach the disease, since the crux of the problem is different in all patients and the symptoms range from few and mild to many and life threatening. There is also no “litmus test” for an easy diagnosis, as we’ll learn later.
Mito is not fake. Mito is not a psychosomatic disease (meaning it’s all in your head). Most importantly, Mito is still severely under diagnosed due to misinformation about the disease (spread in part by these misinforming medical dramas).
The episode named “Reunion” depicts a 13-year-old girl (Michelle) who suffers from Mitochondrial Disease. Michelle comes into the ER with bronchi-spasms (contractions of the respiratory system that are common in some Mito patients). Her father is worried about what the doctors will do in order to save his daughter, because there are many common medical procedures (like general anesthesia) that are not safe for Mito patients to undergo. Before Michelle’s father can fully explain her situation, the doctor cuts him off saying, “I’m familiar with Mito.”
They quickly decide they need to intubate Michelle, and they remove her father from the room. As soon as he leaves, she suddenly, almost miraculously, snaps out of her choking episode (which can happen sometimes in Mito patients as well). However, due to Michelle’s almost instantaneous recovery, the doctors quickly begin to doubt her Mito diagnosis. They remark that, “[they’ve] never seen someone improve so quick[ly].”
Soon, after the first few minutes of the episode, Michelle’s father mentions that she has a G-tube “to help with her nutrition” and a “central line catheter for all her meds.” Remember this information because this will be a key point that shows just how badly "Chicago Med" screwed up. Her father has all of her medical files and history on hand at all times, (again, common with Mito parents), then mentions that his wife passed away four years before, and that’s when Michelle became sick.
Apparently, before Michelle got sick she was just “an ordinary kid.” This is a story that us Mito patients know all too well… Many of my Mito friends were involved in sports, Taekwondo, and a whole other range of physical activities before they became sick.
Often, a communicable disease like Mono (kissing sickness) triggers Mito symptoms and completely alters the patient’s life forever. I still have not heard of a traumatic event triggering Mito symptoms, but it is also common for Mito symptoms to just come about on their own. As with any chronic illness, it can start at any time and it stays with the person forever.
The doctors began to converse about Michelle and her Mito diagnosis.
“She has mitochondrial disease.”
“Mito? We really are talking fiction here.”
“You don’t think it exists?”
“Always felt like a wastebasket diagnosis to me. Doc can’t figure out what’s really going on, says it’s Mito, calls it a day. What’s the muscle biopsy say?”
“That I don’t know. I haven’t found it yet.”
I can’t even begin to describe how much it rips my soul apart to hear my chronic illness be called a “wastebasket diagnosis” on prime time television. Oh, I’m sorry fake doctor, I forgot that you know more about my disease than I do. Please, continue spreading this misinformation about my disease to people who think they’re medical experts just because they watch this poor excuse of a show.
Furthermore, did you notice how the one doctor asked about her muscle biopsy results? Muscle biopsies were considered to be the “litmus test” for Mito diagnoses about ten years ago. Let that sink in…"Chicago Med" is operating their show off of ten year old data. How embarrassing!
Since ten years ago, muscle biopsies have fallen out of favor as a way to determine a Mito diagnosis for several reasons. First, the doctors may get an unaffected piece of the muscle. Second, we have discovered that there are several forms of Mitochondrial Disease that don’t show up in muscle biopsies. So again, I reiterate, there is no “litmus test” for a Mito diagnosis, as "Chicago Med" would have you believe.
You think that maybe the muscle biopsy was just a slip up on NBC’s part? Well, they dig themselves deeper into a hole when Doctor "Doubting Thomas" says, “I highly recommend [a muscle biopsy]. It’s really the only way to confirm a diagnosis as Mito.”
*Head-desk*
Here NBC: educate yourself.
By this point in the episode, there is significant tension rising among the doctors and Michelle’s father. The father mentions that Michelle has a team of Mito specialists (common among Mito patients, myself included), but not once did the "Chicago Med" doctors bother to contact Michelle’s Mito doctors! This is another glaring error on NBC’s part.
The girl has a G-tube and a Central Line Catheter for meds and nutrition. Those aren't just something you can get on a fake diagnosis. There has to be something pretty out of place for the doctors to consider doing such an invasive and life-altering surgery! The fact that the doctors never bother to contact Michelle's Mito doctors is beyond unbelievable to me!
Many times, doctors are misinformed about Mito because it’s such a complex disease. There are still older doctors out there who, having finished medical school 40 years ago, still believe that Mito is exclusively maternally inherited. This is why we have Mito specialists! And it also doesn’t help NBC’s case that they consulted one of the top Mito doctors in the country before airing this episode (Dr. Cohen).They had the resources they needed, and still they fell flat on their faces.
Now, we are about to approach the climax of the episode. The "Chicago Med" doctors know that something is wrong with Michelle, but they are “not buying [the Mito diagnosis].” They mention that Michelle is “[like] a walking pharmacy” because she takes so many medications.
You’d be surprised at how many medications some Mito patients take daily. Some patients need over a dozen just to function. Count your blessings if you don’t have to do that, and stop antagonizing the people who do. It’s not like they enjoy taking them.
The doctors say, “It’s like they’ve built their lives around this disease.” True, but, in a sense, you have to. With any chronic illness, you have to alter your life to accommodate the difficulties that come with it; but, I can understand the difference between accommodating for your disease, and constantly focusing on the disease and how miserable it makes you.
This would be a good time to mention that I hate Michelle’s father. To someone unfamiliar with Mito (aka the majority of "Chicago Med" viewers), he is overbearing, confrontational, and controlling. He never lets Michelle speak for herself, and it is very understandable why the doctors would be suspicious of him. Again, this is how it looks to people, especially doctors who are unfamiliar with Mito, when they encounter a Mito parent. As Mito parents, they are told by Mito doctors to be their child’s greatest advocate (due to the significant amount of misinformation I’ve mentioned about a dozen times now).
In order to find the source of the issue, the psychologist (unethically) spies on Michelle and her father. Not to his surprise, Michelle acts sicker when her father is in the room than when he is out. The psychologist, after showing the video footage to the other doctors, supposes, “We may be looking at a case of conversion theory,” which is a mental disorder in which somebody involuntarily acts sick because they believe they are sick. If I had a dollar for every time a Mito patient was suspected of Conversion Theory, we’d have cured Mito by now.
The issue with this is that Michelle doesn’t look sick, but for a vast number of Mito patients (again, myself included) we don’t look sick, but that doesn’t mean it’s all in our heads! If you were to hang out with me, you wouldn’t see me acting sick. Therefore, you’d think there was nothing wrong with me.
To that, I say thank you! If I don’t look sick, it’s because I try my damnedest every day to stay in the best health I can, and not let my disease control every aspect of my life. But, that does NOT mean I’m not sick!!!
I have my good days, and I have my bad days. And honestly, I’ve been able to keep most of my symptoms at bay for a number of years now. So, if I don’t look sick, it’s just a testament to how hard I try to stay healthy. For my Mito friends who are more adversely affected by this disease, it’s an even greater struggle for them, and the last thing we need to hear is that it’s “all in our heads.”
Back to the episode. Like I said before, Michelle’s father seems very overbearing. And yes, he also gets on my nerves as well. But he gets on my nerves more because I know that this character is being used to represent Mito parents as a whole. That really pisses me off.
Suppose that someone who loves "Chicago Med" meets a family, and the parent says, "my children have Mitochondrial Disease." Based upon the misinformation from this episode, what is the viewer supposed to think about this family?
It seems like “[the entire relationship between Michelle and her father] is driven by her being sick and him taking care of her.” I felt that this was a fair point. There are some people in the chronic disease community that focus so much on their disease or use it for attention, that they besmirch some of the advocacy that we try to do. I, personally, know Mito patients who I feel are under the thumb of medical child abuse, but that does not mean they don’t have Mito. They have Mito, yes, but the way they and their family approach their disease could be considered very reactive and emotionally unhealthy, rather than proactive. But separating the Mito patients from their family would be detrimental to their well-being.
One of the medical professionals goes on saying, “If there is even a one percent chance of abuse taking place, we have an obligation [to step in],” But by the numbers alone, every single patient, no matter their illness, has a one percent chance of being a victim of medical abuse. Idiot writers. When the psychologist confronts Michelle’s dad, the father, again, goes on the defensive.
Dad: “I’ve been making her sick? Is that what you’re accusing me of?”
Psy: “It’s much more complicated than that.”
You know what I find so flipping rich? I find it amusing that NBC considers medical abuse to be a “complicated” issue, yet fails to recognize that Mito is a “complicated” disease. It just blows my mind the kind of double standard being shown here.
Now, here is where the biggest slap in the face comes for the Mito community. Once the doctors take Michelle away from her father (suspecting medical child abuse), they feel bad about doing it. Do you have any idea what this does? The doctors feeling bad about taking Michelle away makes the audience sympathize with the doctors rather than the patient!
It never fails with these damn medical dramas. It seems that no matter what the situation is, the doctors always know best, and the doctors are always the good guys, and the doctors are always infallible.
To further cement the audience’s sympathy for the doctors, Michelle’s father accepts the situation and no longer challenges the “all wise and all knowing medical ‘professionals.’”
I’m not saying real life doctors are quacks. Well, some are, but what I’m saying is that these doctors on TV are fake. “Well duh,” you say, “everyone knows that.” But do they really?
As a medical drama, the audience is putting a lot of trust in the writers of the show to accurately portray real life diseases, and when shows can’t even deliver on that, how can we trust the audience to actually understand a disease as complex as Mito? For many people, what they know about Mito comes from this "Chicago Med" episode, and I do not regret to inform you that you have been seriously misled, yet again, by another big name TV brand looking to make money.
That’s what these shows are for. These shows do not seek to inform; their one and only goal is to make money.
The truth of the matter is that there is not a lot of money in Mito research, nor is it very profitable for doctors to study it exclusively. This is why half of our Mito clinics have shut down within the past two years. And since Mito is a disease that affects how your body makes, uses, and distributes energy, it might not (but may) surprise you to learn that a vast majority of people with any disease suffer from some kind of Mitochondrial Dysfunction.
Case in point, research into Mitochondrial Disease not only benefits Mito patients but research into Mito benefits every single sick human being on the face of the Earth. But, our advocacy efforts are greatly set back when lackluster shows like "Chicago Med" throw our disease out as a “wastebasket diagnosis.”
The episode did a fantastic job at showing what the life of a Mito patient is like. I have had multiple friends taken from their families by hospitals who suspected their parents of medical child abuse and the hospitals were wrong every…single…time.
This episode of "Chicago Med" shows a favorable and idealistic view of the DCS/CPS (Child Protective Services) system that is far from reality. It is also just a dramatized version of the Pelletier Case, in which the Massachusetts DCS screwed up big time and brought Mito to the front pages for the wrong and incorrect reasons.
Don’t let medical dramas control your medical information. They don’t care about informing you. They care about profiting off of you and those of us whose diseases they misrepresent.
For more information on Mito, you can go to the United Mitochondrial Disease Foundation (UMDF) and MitoAction websites. Let's advance REAL, INFORMED awareness together!
