Actress Halle Berry, known for leading roles in “Catwoman,” the X-men film series and her Oscar-winning performance in “Monster’s Ball,” also happens to be one of the most controversial celebrities with diabetes of all time.

She spawned confusion about the types of diabetes in what many referred to as “The Great Halle Berry Diabetes Ruckus,” which still rubs many of us the wrong way more than a decade after it surfaced in 2007.

Talking about her health at the time, the actress claimed that she was diagnosed with type 1 diabetes at age 22, but after immediately adopting a keto diet, she supposedly managed to “cure” herself of this autoimmune illness and magically weaned herself off insulin. It appears she wanted to downplay the condition to preserve her own image as strong and glamorous.

Ugh.

The D-Community lit up in response, frustrated and angered by this misinformation, and many in the medical community questioned whether the actress actually knew which type of diabetes she had. Some speculated she was confused, others noted she may have been misdiagnosed with T1D when actually she lived with type 2 diabetes. Campaigns materialized to change the names of diabetes types to avoid future confusion, while many were inspired to dip their toes into online advocacy for the first time as a result.

Eventually, that firestorm faded. But feathers got ruffled again in 2013 when Berry gave birth to her second child in her mid-40s. Her later-in-life pregnancy sparked a whole new discussion about whether women with diabetes at that age should attempt to have children. A slew of advocates and health experts stepped up to dispel myths — showing that a pregnancy in your 40s is not taboo, and that diabetes management is important but certainly doesn’t prevent anyone (either T1 or T2) from taking care of themselves and having a healthy, happy pregnancy.

Cue head shakes, again.

Though she eventually started referring to herself as having T2D at some point, Berry has teetered back and forth over the years and hasn’t definitively cleared up the confusion she caused.

Halle Berry

In 2020, Berry’s statements about her health and diabetes are once again in the news. In April 2020, she launched an early version of a new wellness app called Re-spin, aimed at creating an online community for people to share stories of weight loss and healthy habits. Of course, this brings up fresh comments about her past claims to have “reversed” T1D, and is looking like another channel for misrepresenting people whose lives depend on taking insulin.

Maybe it’s a case of nine lives, like her past role as Catwoman. Any way you dice it, this feels like an example of a celebrity voice on diabetes we could do without in this age of fake news and misinformation.

For most of us living with diabetes every day, breaking down the different types of diabetes seems rudimentary. We know there is the autoimmune condition of type 1, the more lifestyle-linked but genetic-related type 2, as well as gestational diabetes that affects women during pregnancy. There’s also LADA (latent autoimmune diabetes in adults), which is really just a name and description for adult-onset type 1 autoimmune diabetes. And there is a more rare type called MODY, or “maturity-onset diabetes of the young” that runs in families.

Yet, confusion remains even among the medical community on just how many types of diabetes really exist and what they should be called.

In March 2020, a new study from the University of Exeter in the United Kingdom indicated for the first time that T1D may not be a single condition. The study showed that kids diagnosed with diabetes at age 7 or younger do not process insulin properly as their insulin-making beta cells are being destroyed, but those 13 or older often continue producing normal insulin.

This indicates that young children diagnosed with what was referred to as T1D may have a different condition entirely from those diagnosed at age 13 or older.

In a paper published in the medical journal Diabetologia, the Exeter researchers suggest new names for these two distinct classifications:

  • Type 1 Diabetes Endotype 1 (T1DE1) for those diagnosed in the youngest children
  • Type 1 Diabetes Endotype 2 (T1DE2) for those who are older at diagnosis.

Well now, that just seems excessive and likely to compound confusion, if you ask us.

Don’t forget that over the years the names evolved from “juvenile” and “adult” diabetes to insulin-dependent diabetes mellitus (IDDM) and non-insulin dependent mellitus (NIDDM), and eventually to type 1 and 2, which seemed “generic and symbolic” enough to hopefully clarify things. Yet those of us living with diabetes are still explaining… and explaining… and explaining!

Comments from celebrities like Berry indicating that you can make T1D “go away” do a disservice to all of us stuck with this lifelong illness.

The short answer: No.

People with T1D, or those children fitting into the above-mentioned endotypes who require insulin, have an autoimmune condition that means they aren’t producing their own insulin. No human can live without insulin, and those with T1D need to get it artificially since our pancreases don’t produce our own to allow us to survive.

When it comes to type 2 diabetes, medical professionals often disagree on whether you can truly halt the condition. Most agree that you can sometimes do away with the symptoms of T2D with lifestyle changes, such as your diet, exercise, surgery, etc. With these changes you may “wean yourself” off diabetes medications. As a result, many in the medical profession and even the American Diabetes Association (ADA) push the message that you can “reverse T2D.” But they’re really referring to more of a remission period than an actual long-term cure.

The bottom line is that if Berry no longer requires insulin, she does not now nor ever had T1D, no matter what she claims. The only way she could have weaned herself off insulin is if she had T2D. It may be treated with insulin but the drug is not required for survival.

Berry’s initial claim to have “cured herself” of T1D sparks dangerous misconceptions from the general public like, “Halle Berry stopped taking insulin, so you can, too!”

Note that Berry isn’t the only celebrity whose type of diabetes is unclear. The rapper Phife Dog of Tribe Called Quest died from diabetes complications in 2016, with conflicting reports about whether he had type 1 or type 2. The confusion may be part of a larger cultural blur that happens within some African American communities, and a general discomfort about talking about diabetes.

Existing stigma around illness in U.S. Black communities can hold many people back from talking honestly about their struggles.

Still, Berry’s mainstream superstar status puts the onus on her to choose her public statements carefully. She has an unprecedented opportunity to either educate or misinform.

Berry’s name pops up repeatedly on the topic of stars and celebrities with diabetes. In fact, I personally remember one local event-planning meeting where someone suggested her as a guest speaker. At the time, I laughed out loud and quipped: “Only if we can throw tomatoes at her on stage!”

My comment was met with blank stares and eyebrows raised in confusion. It turned out that my fellow event planners knew only that Berry had been in the news connected with diabetes.

When I filled them in on the misinformation she was spreading, the reaction was: “Still, she has diabetes, and that star power would bring in so many people!”

This brought up an interesting topic: Where’s the line between netting a spokesperson with pure star-power versus choosing someone who will be a responsible spokesperson? Remember the controversy over celebrity chef Paula Deen? Many were shocked when this “Queen of Butter-Soaked Southern Cooking” would suddenly be held up as a role model for people with diabetes.

Personally, I would hope no one would ever consider Berry to be a great choice as the public face of diabetes. Yet, that hasn’t stopped her from stepping up to raise awareness, particularly among African-Americans who are at higher risk of developing T2D. In fact, in 2004, she was tagged as the first ambassador for the National Diabetes Education Diabetes Aware Campaign, with support from the Entertainment Industry Foundation and Novo Nordisk.

Sure, she’s not the only one and won’t be the last to cause confusion. But I think the patient community has an obligation to speak out against those who misrepresent their cause.

Kelly Kunik

Kelly Kunik, for one, a longtime type 1 and diabetes blogger, actually started her blog Diabetesaliciousness in reaction to the first wave of controversy over Berry a decade ago.

Kunik lives in the Philly area and hails from a family with at least eight members living with T1D. She lost her sister to the illness some years earlier.

When she read about Berry, “I got mad,” she says. She wrote numerous posts to clarify the issue. “And then I went a step further and… picked up the phone and called Halle’s publicist in the N.Y. and LA offices. And she called me back! That experience really lit the spark regarding diabetes advocacy!”

“I don’t appreciate or like that she called diabetes ‘a little disease,'” Kunik says. “It’s not a little disease. It’s complicated, complex, and incredibly misunderstood by the public. Those of us living with diabetes don’t think it’s a little disease. Neither do our families. Diabetes is all-encompassing. And by calling it a little disease, she does a huge disservice to the millions living with T1D, LADA, and T2D.”


Mike Hoskins is Managing Editor of DiabetesMine. He was diagnosed with type 1 diabetes at age 5 in 1984, and his mom was also diagnosed with T1D at the same young age. He wrote for various daily, weekly, and specialty publications before joining DiabetesMine. Mike lives in Southeast Michigan with his wife Suzi and their black lab, Riley.