D.C. Politico with chronic migraine
Melissa Kelly’s day starts with a 15-mile, hour-long commute from the Virginia suburbs into DC, where she then passes through metal detectors of the 54-year-old Rayburn Building and climbs the marble stairs to her office where she serves as Chief of Staff for a congressman in the United States House of Representatives. Melissa also lives with chronic migraine disease. A high power, demanding job and a relentless, disabling condition typically don’t mix well together, but Melissa has found a way to successfully handle both.
Work and migraine
Melissa describes her life with migraine disease as “a lifelong battle to determine best treatments and minimize the impact on my life. I work in a highly stressful job and have learned over the years to live with the pain.” She says people chuckle at her when she wears sunglasses inside the halls of the Capitol, but it doesn’t phase her – she listens to her body, not those who don’t understand.
Melissa has worked with her boss for ten years. Before being promoted to Chief of Staff in 2018, she occupied many roles including Director of Communications and Deputy Chief of Staff. As Chief of Staff, she oversees a staff of eight in DC plus additional employees serving in two local offices in the congressman’s district. Melissa is the glue that keeps everything running. She serves as strategic counsel, prioritizes the demands of the congressman, takes meetings on his behalf, manages the communications released from the office, trains staff to carry out specific tasks, oversees budgets, and is considered the most trusted advisor to the elected representative. Melissa basically has to be a chameleon, predict the future, anticipate fire drills, be a mind-reader, and a peacekeeper – all while advancing the objectives of the constituents she works for every day.
In one survey 94% of women with migraine felt their employers don’t understand the burden of migraine on their employees. Many of those with migraine are often hesitant to discuss their disease with their boss for fear of being stigmatized, Melissa sings the praises of her boss and co-workers. The congressman set the empathetic and family-oriented tone in the office because of his own personal tragedy in which he lost his wife in a car accident six months after their wedding. He always says that “family and health are the most important.”
Every building on Capitol Hill has a designated nurses station. If Melissa is hit with a particularly debilitating attack, she can go to the infirmary where there is a dark room with a cot she can use. When she used to share a room in her office with a coworker, the other person was willing to draw the shades, turn off the overhead light and use desk lamps in order to make the environment more conducive for Melissa.
In the U.S., those with chronic migraine lose about 14% of annual productivity. The workplace accommodations afforded to Melissa may seem insignificant, but can make a huge different in her productivity during a migraine attack. Under the Americans with Disability Act, employers are legally bound to make accommodations such as adjusting lights, allowing sunglasses to be worn inside, or even having the ability to work from home when needed, however it is all too common to hear that companies are unwilling to do so or eventually create a difficult work environment so that the employee either quits or is fired under false pretenses.
When migraine hits home
When Melissa’s adolescent stepson confided in her that he was having horrible head pain, sensitivity to light and sound and nausea, she knew exactly what was happening to him and what to do next. Melissa began experiencing migraine attacks at the age of 21. No one in her immediate family had migraine, so it took years for her to get a proper diagnosis. Although she endured excruciating pain until she found a neurologist who knew how to treat her complex migraine disease, that experience allowed Melissa to help her stepson to get the care he needed quickly. “I could relate to his pain and help him manage it.”
Her husband is incredibly empathetic and serves as a strong support system to Melissa and his son. She attributes his kind and caring demeanor to his personal experience growing up with a mother who had a chronic illness. She realizes how lucky she is to have a partner who is so understanding.
Little did she know that migraine, a disease that isolated her, would eventually invade other members of her family as well. In the past year, Melissa’s cousin shared her own struggles with worsening migraine attacks. Melissa encouraged her to see a neurologist, where she was diagnosed and received preventive medications that have made a difference in managing her attacks.
Melissa’s brother served in the military and suffered a traumatic brain injury (TBI) during combat. He, too, now experiences migraine attacks. According to the Headache and Migraine Policy Forum:
- 36% of service members deployed to Iraq for a year or more experience migraine.
- Veterans with TBI are more likely to develop chronic migraine.
- Depression and post-traumatic stress disorder (PTSD) are often comorbid conditions with migraine.
- There was a 27% increase in the prevalence of migraine among those in the Armed Forces from 2001 to 2007.
In June of 2018, Congress appropriated $10 million to create seven Headache Centers of Excellence with the VA to serve the growing population of service members who experience some type of headache disorder.
Real life with migraine
Although Melissa’s migraine disease is better managed than when she had her first attack 25 years ago, she still averages at least one per week. It always hits her on the left side of her head and tends to begin on her way home from work. This is considered a “let-down” migraine. While stress is a common migraine trigger, the lack of stress can also start an attack. The medical journal Neurology states that “in the first six hours of reduced stress, a person’s risk of getting a migraine increases by nearly five times.”
Melissa uses a triptan called Zomig when a migraine hits. Because of the unpredictable nature of migraine, Melissa, like so many others tend to “hoard” their rescue medications. Insurance restrictions and concern of rebound headaches limit the number of abortive medications that are prescribed or approved per month. The most effective way to treat an attack is to take rescue medication at the very first sign of a possible migraine.
However, people may skip taking their medication for fear of needing it for a more serious and disabling attack. Additionally, people may hide them in multiple places so they are accessible at any time. Melissa keeps a few pills safely squirreled away in her car, in her desk at work, in her purse, and of course in her medicine cabinet. Water, sunglasses, ear plugs, and medication lists are other items that are readily available. These tricks and workarounds are a fact of life that those without migraine fail to realize are everyday concerns.
In Melissa’s own words: “One of the most hurtful comments I have heard is that the pain is imagined and not genuine. If people who don’t suffer migraines could truly understand what we go through it would be extremely helpful. However, more than anything I wish no one had to experience the pain of living with migraines.”
Wisdom and hope
For anyone who is newly diagnosed, Melissa is honest that finding treatments to reduce the frequency and severity of attacks requires patience, trial and error. “What helps one person might not help another. It’s worth the time to have your doctor give you different medications to see which one is best for you.” Melissa has gone through a myriad of preventive medications until finding one that didn’t give her unbearable side effects. Other pharmacological treatments had previously caused severe dizziness, made her fingers and toes tingle and caused most food to taste metallic.
Melissa remains optimistic about the advances in headache medicine. While she has not tried any of the new CGRP inhibitor therapies, she is starting the process of researching if these medications are right for her.
Headache & Migraine Policy Forum: headachemigraineforum.org