What Profound Truth Bombs Did Empire Drop About Rare Disease?

Between all the murder, betrayal, and Shakespearean-esque drama, no one would say Fox’s breakthrough, musical-hit Empire represents reality. But one can argue the show represents an important step forward for the rare disease community.

Here’s why: Unless you’ve literally never seen a television before, you’ve probably heard of Lucious Lyon, Empire Entertainment’s “king of the jungle,” who was diagnosed with amyotrophic lateral sclerosis (ALS) in the show’s pilot.

Well, turns out, the doctor wasn’t entirely… accurate.

In a narrative that’s surprisingly familiar to many of us, the season one finale revealed that Lyon is the victim of misdiagnosis; rather than ALS, he actually has myasthenia gravis (MG), a neuromuscular disorder that shares some of ALS’s symptoms.

What does this mean for the leader of the pride? Everything. While ALS is currently an incurable fatal illness, MG is classified as a treatable, chronic condition.

Cue Lucious’ sigh of relief and the rare disease community’s excited uproar. This was a major moment and not just from a plot-twist standpoint. Not even because MG is so rare. It’s major because rare disease visibility in general, and often in minority communities can be incredibly hush-hushed.

Yet, here is Empire–a show on a big network with a breakout cast of minority characters–setting up to explore not one, not two, but at least THREE diseases in its run: ALS, MG, and the eldest Lyon son Andre’s bipolar disorder.

In doing so, they’re bringing to light some very important cultural challenges that pounce when you’re a chronically ill minority, including:

1. Stigmas and Misunderstandings

When Cookie, the Lyon matriarch, talks about her son Andre’s bipolar disorder, she dismisses it as “white people’s problems.” If it surprises you to hear mental illness dismissed like that, it shouldn’t.

There’s stigma around mental illness in the best of circumstances. It’s even worse in the black community, where there is a 20% more likelihood of experiencing psychological problems than white people (non-Hispanic), but less of a likelihood to seek help. The lack of understanding about mental illnesses, the silencing of suffering, and potential views that such conditions make you weak–or should be dealt with firmly in the family- definitely do not help.

2. More Identities, More Problems

As a minority in america, there are often societal hurdles we have to jump. With all these additional hurdles, to then add an illness on top of it? Well, shit.

Even the ever rich and powerful Lyons (well, not so much Hakeem) are acutely aware that their positions are tenuous, and when you’ve succeed in the face of institutionalized racism, you’re loath to face one more challenge in addition to simply being not-white.

3. Fear of Weakness

In an interview, Terrence Howard, who plays Lucious Lyon, says the character tries to be “the epitome of a ‘man’ in the black community.” And in the black community, reputation and strength can be everything. Lucious is willing to do whatever it takes to keep that intact—keeping his ALS diagnosis from his family and the public for an entire season.

It’s a common phenomenon in the rare disease community itself. Besides the increased difficulties and distrust involved in accessing healthcare, many patients just don’t want to admit to weakness. No one wants to be seen as the wounded gazelle.

But ultimately, silence doesn’t help us. Not seeing our faces in support groups or on television, discussing these conditions, doesn’t help us. Minorities and those of us with rare disease need to feel bolstered and represented both within our communities and outside of them.

Is the representation on Empire perfect? No, and Jessica Gimeno can give you the scope on what’s right and what’s wrong with it. But it’s progress, and when the need for representation is so great, that’s nothing to paw at.

Kiki Jones

Kiki Jones

Kiki’s family loves to say, “People are like a baking project. At some point, they’re just done and they’re who they’re going to be.” Well, Kiki still has some baking to do, and she learns a lot from her loved ones living with chronic conditions, including mental illness and Behcet’s disease. With a BA in English, she’s using her skills to tell the stories of people like them.

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