Visible Burden, Invisible Disease

What’s worse than battling a debilitating, painful and costly disease? Having to convince people that it’s real.


Yet that’s just what many of the 40 million Americans with migraine and headache disorders must do. In a panel discussion during the recent National Summit on Balanced Pain Management, advocates pinpointed several common myths– and described how stigma compounds the pain of headache disorders.

“It’s not ‘just’ a headache,” Jan Brandes, MD, emphasized, and it’s not simply a symptom of stress. “If it were because of stress, there’s not a person in here who wouldn’t have had [a migraine] in the past week,” Dr. Brandes noted, referring to the summit audience. She also dismissed the notion that migraine is a disease concocted by women who simply want to get out of something.

These stereotypes resonated with panelist and blogger Jamie Sanders too. “The burden of proof falls on the patient,” Sanders noted. She described how it took her 12 years to get to a headache specialist, explaining that, when women go the doctor, “they think you’re exaggerating your pain.”

Migraine is sometimes misinterpreted as a sign of weakness in women. Perhaps the stereotype lingers because migraine is, in fact, invisible and disproportionately affects women. Three out of every four people with migraine are female. Yet its effects reach far wider. Workplaces, communities and families feel the impact of the disease second hand, with the United States experiencing $36 billion in health care expenses and lost productivity. Employers see 113 million days of missed work each year.

Common comorbidities such as anxiety and depression can complicate treatment. Yet patients must find a way to drive their own course of care. Penny Cowan of the American Chronic Pain Associationexplained the need for people to track symptoms and triggers so they can report details to their health care provider. She also emphasized the importance of a team approach to migraine treatment. “It can’t just be ‘Doctor, fix me,’” Cowan noted.

Yet migraine and headache disorders patients have historically had few treatment options. In the absence of therapies that effectively treat their condition, some patients have been prescribed opioids for the pain associated with their headache. But as Dr. Brandes explained, opioids are not the first resort for migraine. In fact, they could actually increase the frequency of headaches.

Jamie Sanders emphasized the role of integrative and patient-focused treatment. The sentiment linked into the day-long summit’s theme – that personalized, multi-prong pain treatment could better serve patients and also provide alternatives that help curb the nation’s opioid abuse epidemic.

“Everyone should be treated as a whole person first,” Sanders summarized.

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