January 19, 2022

An Interview With Patient Advocate Rachel Koh

An Interview with Patient Advocate Rachel Koh

Rachel Koh excelled in her career in spite of disabling migraine attacks. Now, as a patient advocate for GPAC, she shares her story and supports other people working and living with migraine.

Rachel Koh was a high-powered executive and mother of two young children. She was living life nonstop until she hit a breaking point. After 10 years of being misdiagnosed, she finally had an answer: Migraine. Turning her pain into purpose, Rachel joined the International Headache Society’s Global Patient Advocacy Coalition. Now, she works to help others manage their migraine so they can live and work to their full potential.

Earning Career Achievements in Spite of Migraine

For years, Rachel worked at her maximum effort while living with migraine. She’d fill in for other people and answer every phone call and email. She worked full time, spending three days a week in Manhattan and the rest of the week in Boston. With a busy travel schedule, her stress was constantly sky-high.

Rachel finally received her migraine diagnosis after work travel escalated her symptoms. “I would always get sick on my way home from Manhattan on the shuttle flight back—sick, full-body assault, head pain,” she says. “I went to the emergency room because it had been three days, and I had nothing left to vomit up. That’s when I got diagnosed.”

Despite debilitating head pain that brought on abdominal symptoms, visual disturbances and sensitivity to bright lights and loud noises, she pushed through and kept going. “I have had a very successful executive career and hid [my migraine] as much as I could. I worked ahead so that I never missed a deadline,” says Rachel. When she traveled for work, she’d sneak back to her hotel room to take her abortive migraine medications.

Because of her nonstop pace and demanding job, Rachel’s episodic migraine became chronic. At that point, she decided to travel to see different experts around the country and seek out a headache specialist. In the process, she learned more about her diagnosis, managing her symptoms and advocating for herself. “I advocate for migraine by having the courage to tell my story,” she says. “It’s taken me a long time to get to this point.”

A New Purpose in Joining GPAC

After leaving her job in 2015, Rachel set up her own consulting agency, thinking it would allow her to manage her migraine triggers better. Two years into running her own business, she realized it only brought more stress and increased work. “I reached a breaking point where I needed to stop working. And I lost purpose,” Rachel says. She knew she needed to find a new purpose—a way to feel productive and make a difference while improving her health. With encouragement from her neurologist, Rachel turned to the American Migraine Foundation in early 2017.

Rachel found a community in the Foundation’s online support group, Move Against Migraine. “I was overjoyed that I was not alone,” she says. She started commenting and engaging with other members. Soon, she was invited to apply to be a moderator.

“That was really my first step into official patient advocacy work. I realized the power of voice and the importance of reducing stigma,” says Rachel. In her moderator role, she listened and validated people’s fears and their symptoms. “It lit a fire under me with a renewed passion for being productive.”

Rachel soon closed down her consulting agency to focus on migraine advocacy work. She is now an executive committee member for the Global Patient Advocacy Coalition (GPAC). “I joined GPAC as a way for me to do more for our community on an international scale,” says Rachel. “There are one billion people who suffer from some sort of migraine globally, and I wanted to be able to impact that number.”

Not only is Rachel influencing global programs, but on a personal level, she is meeting and learning from other experienced advocates. In addition to her GPAC role, Rachel also engages in other advocacy activities like participating in fundraising walks for migraine awareness and lobbying U.S. policymakers for more research funding.

Making an Impact as an Advocate

Rachel holds a unique position as a person living with migraine who advocates for other people with migraine. “I think advocacy begins with yourself,” she says. “You need to step up and take care of yourself, and really explore what your own needs are and be clear about that with the people around you… Once I was confident enough to speak my truth, I was brave [enough] to ask for help. We try to hide when we’re sick and don’t want to be a burden to the people around us, so it really took some courage for me to ask for help.”

She hopes her work helps others realize that they are not alone. She wants them to know migraine is a disease and not in their head. Her focus on building awareness and reducing the stigma of migraine has an incredible impact on individuals, their families and their workplaces.

With her business background, Rachel understands the importance of being productive. It matters both for one’s sense of purpose and a business’ bottom line. “Having increased productivity leads to bottom-line gains,” she says. “Whether you’re a for-profit or not-for-profit, global, local, any kind of business—somebody is struggling to concentrate because of brain fog, having nausea or any of the other symptoms. Not just the head pain on the day of the attack, but going through the many phases that are migraine disease.”

Serving as a patient advocate allows her to make an impact for others. “Advocacy, to me, means standing up for yourself, someone you love, someone who needs help,” Rachel says. “It’s not just for the patient themselves. Advocacy is for all of us to try and better the lives of the people around us.”

How To Manage Migraine at Work

With her personal experience living with migraine while working, Rachel has learned many ways to manage symptoms and prevent attacks. “I think the key points for working [with migraine] are to set boundaries, be brave to ask for help, be kind to yourself, know your triggers and try to avoid them,” she says.

One of the main ways Rachel balances her work demands and migraine is through time management. By carefully managing her schedule, she makes sure to pace herself and accept her limits. Rachel does most of her work in the mornings, scheduling meetings or in-person events during that time. This is because her pain typically builds throughout the day. After focusing on more collaborative work in the morning, she’s able to build momentum to help her through the rest of the day.

Rachel then blocks her calendar for the last two hours of the workday for independent work. “Whether I use that or not depends on how I feel, but nobody usually gets an email from me during that time,” she says. She limits her email use on nights and weekends, and her colleagues have learned what to expect in terms of response time.

“I also work ahead. I’ve always done this my entire working life. I’m not a procrastinator,” she says. “If I have a deadline, I actually prepare days in advance to give myself a cushion, just in case I am feeling unwell leading up to the deadline.” To help her plan ahead, Rachel relies on tools like calendars and alarms. She checks her calendar every day to know what’s coming up and what to work on when she feels well. Then she sets alarms—with music to help avoid auditory triggers—to remind her to get up and move about once an hour, rather than stare at the computer for hours and potentially trigger a migraine attack. These boundaries also ensure she maintains regular eating and sleeping schedules.

When she is scheduled to travel, Rachel decreases her anxiety by making a plan. Besides packing medication, she researches her destination and locates the nearest urgent care unit in case she needs medical care. “I also identify at least one person who will be with me that I trust, and I know I can call for help if needed,” she says. “I just can’t tell you what this does to reduce the anxiety of the ‘what if’ situation.”

Workplace advocacy and reducing environmental triggers in work settings is also important for those living with migraine. “Just removing one trigger from someone’s day can mean the difference between functioning and being in a dark room,” Rachel says. She suggests requesting special accommodations at work to limit exposure to triggers. For example, she’s learned that it helps to avoid fluorescent lighting or use a desk lamp with a softer bulb and move away from loud areas, such as an elevator bay, cafeteria or conference room where the door is always open. If coworkers wear a lot of cologne, perfume or frequently light candles, Rachel explains that the scent can trigger migraine attacks for others.

“My aim in building awareness is to reduce the stigma associated with migraine,” she says. “There are one billion people worldwide who live with migraine disease. There is no cure. This is something that is underfunded in terms of research, it has a high level of stigma, and people don’t come out with their stories even if they know what they have.” By sharing her story and connecting with others through her GPAC role, Rachel is making an impact on a global scale.

If you’re interested in bringing the IHS-GPAC Migraine Fitness at Work Program to your workplace, learn more about GPAC and find helpful tools to help you make a difference on the IHS-GPAC website.

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