The Truth About Migraine Isn’t Beautiful - Those Tackling The Disease Are

Today’s guest blog comes from Christi Shaw, Senior Vice President and President of Lilly Bio-Medicines.

Like most of us, I try to keep up with what’s driving the social conversation, whether that be business, politics or the next great show to binge watch. Recently, I noticed the latest trend sweeping Instagram among female celebrities and influencers is to post what many have called the “Migraine Pose.” To some, this might seem like any other passing social media fad or pop culture phase. As someone who works closely with people living with migraine, I know intimately this is actually something more harmful, as it is yet another way many people are adding to the stigmatization that belittles and trivializes the recurring pain that people with migraine endure. So yes, the women striking this latest “insta-pose” are beautiful, but it’s important to understand that they are not the warriors on the frontlines living with this debilitating disease. It’s time we turn our attention to those warriors, instead, and change the dialogue around migraine.

The reality is, there’s nothing glamorous about migraine. Imagine one morning you expect to start your normal routine before work, but upon waking up, your vision becomes blurred or even worse, you can’t see. Or it’s noon, and you’re at work preparing for a meeting, when suddenly, you’re overwhelmed with debilitating nausea or become so sensitive to the normal lights and sounds in your office that all you can do is look for a place to ride out this neurobiological storm. These are the realities of people living with migraine, and even as one excruciating attack passes, they live with the fear of the next, which could loom just around the corner.

In many ways, the ongoing misunderstanding of migraine is hard to believe, given how common the disease is.

  • Almost 12 percent of people globally, with an astounding 36 million in the U.S. alone, suffer from migraine.
  • The 2016 Global Burden of Disease Study ranked migraine among the top five causes of years lived with disability for people worldwide.
  • It’s a debilitating neurological disease, with real consequences – a migraine attack can be so disabling it prevents the person from doing even the most basic activities, like spending time with family and friends or running errands.
  • Beyond the physical, emotional and psychological impact of migraine, the disease also has massive economic ramifications: estimates show that American employers lose approximately $11 billion each year to migraine due to factors such as missed work days and decreased productivity.

 

Despite this clear and staggering impact, when a person says they have a migraine, it’s often not taken seriously. At the root of this stigma is the widespread misperception of the disease — that people who have migraine are exaggerating or that it’s a “personal problem” not to be taken seriously. And for women, who comprise the majority of people living with migraine, it’s often assumed that the disease is caused or exacerbated because they’re somehow weak, hormonal or simply “dramatic.” Especially in the workplace where employees or colleagues are often dismissive of migraine, leaving those suffering from the disease to work through their pain because they “look fine” and don’t want to run the risk a colleague or supervisor questions their commitment to the job or their ability to do it successfully.

Part of the reason migraine is so incredibly debilitating is the lack of effective treatment options. This is an important part of the necessary change in the dialogue around migraine. In addition to destigmatizing the way we think and talk about the disease, we need to shift the conversation toward the urgent need for more research and better treatment options. I’m proud to lead an important part of that work at Eli Lilly and Company, where we are deeply committed to both changing the narrative around migraine and to developing new medicines that may offer people living with migraine new options to treat, or even prevent, their attacks.

Migraine isn’t beautiful, and it’s not a fleeting moment in time that can be captured with the right filter and hashtag. However, there is beauty to be found. Beauty in the fact that we are working to reframe the way we talk about migraine, beauty in the hope of a new era of treatments and most importantly, beauty in the millions of people, their doctors, nurses and loved ones who take the fight to this disease every day. These are the insta-poses we want to see. These are the stories we should document and do so with the accuracy and respect they deserve.

Comments

I have lived with migraines for 35 years and, as if it isn't bad enough living with horrible pain and other debilitation symptoms 50% of the time, we also have to live with stigmatization and if we can keep our jobs. Even though it is an illness an employer is legally obliged to make accommodations for, you can't tell most employers you get migraines because as one boss said to me "If I had known you get migraines I wouldn't have hired you." Insurance companies limit the amount of medication you can take so there is constant anxiety if you go over the number allowed if you will be able to cope. It takes you every last bit of energy you have to go to work and do your job coping with a migraine. Add to that the fact that most migraine preventives and abortives make you drowsy and muddle headed, life is a constant challenge. So stop using the word migraine for anything but what it is a horrible, painful, debilitating disease that it takes a lot of courage to live with and try to function like a normal human being and have any kind of life.