Rare Migraine, Rare Dedication: bringing personal experience to her job as AMF Director.
Nim Lalvani was in college when she had an inexplicable medical episode with extreme motor weakness. One side of her face drooped, numbness in half of her body set in, and her speech began to slur. Her friends thought Nim was having a stroke and rushed her to the emergency room. After a full neurological workup, including imaging of her brain and blood vessels, doctors ruled out stroke. What Nim had just experienced was a hemiplegic migraine attack, a rare form of migraine causing temporary paralysis and impaired motor skills.
Navigating life with pain
Upon diagnosis, Nim had to find a way to navigate school and young adulthood while coping with her life-changing disease, as well as polycystic kidney disease (with which she was diagnosed at 22). Not having any personal connection or relationship with others living with migraine, she felt alone with no idea where to turn for information and support.
Nim successfully graduated from Northeastern University, and received a Masters in Public Health at Hofstra. Despite these achievements, she struggled to explain to professors (and later, employers) how profound an effect her health was having on her work. Relationships also suffered. One boyfriend called her ‘a burden,’ while others ended things abruptly.
“So many times, people made me feel ashamed or not credible because they thought I looked fine,” she recalls. “It was hard to justify… and I felt that I had to justify it no matter what.”
“It’s like having uninvited guests when all you want to do is go out,” she explains. “Migraine disease takes my time. Even when I am not having a migraine attack, I am busy thinking about triggers, wellness, and worrying if my next attack will coincide with something I really want to commit to.”
This was an especially challenging period for Nim, as she was forced to navigate the world of college, young adulthood, and new chronic health problems all at once. With time, and through trial and error, she came to recognize that her needs were very different than that of her friends and social circle. “Even though alcohol and all-nighters have a place in college culture, I learned that they weren’t worth it for me,” she explains. Nim had learned the hardest lesson of all: how to manage her symptoms and successfully advocate for herself.
It is never easy to balance hope with realism, or aspiration with pragmatism when coping with chronic pain. After so many health scares, Nim jokes sometimes that she hopes she doesn’t end up ignoring a major problem, because her tolerance for pain is now so skewed. Luckily, she’s found a network of family and friends that watch out for her.
“Most of my experiences have landed me in the emergency room so now, I am almost afraid to say when I am in pain because I don’t want to end up in the hospital,” she shares. “Luckily, my husband knows my signs and symptoms, and he helps get me out of that thinking so that I can get the care I need.”
Nim discovered patient advocacy groups like the American Migraine Foundation and the National Kidney Foundation. What brought her the most comfort was understanding that migraine is a real disease. “There are millions in America alone living with migraine disease,” Nim explains. “Most of them do not feel confident or secure enough to speak about their experience. That is not OK. Invisible illnesses are not any less debilitating or life-altering than other more obvious diseases. We need to pay attention and address the needs of patients living with all diseases. Don’t give up hope: There is a community that can support you.”
The perfect job
Nim has years of experience working in the nonprofit patient advocacy space. Due to migraine, she had to cope with the perception that she was unreliable or shirking her work because of missing days for attacks. In 2018 Nim was looking for a new job when she stumbled upon the perfect fit, one she was uniquely qualified to do. In June 2018, Nim was named the director of the American Migraine Foundation (AMF).
AMF provides education, support, and resources for the millions of men, women, and children living with migraine. She proudly serves as the leader, face, and the day-to-day executor of the nonprofit’s strategy and initiatives. But most importantly, she connects with patients and tries to make sure that no person with migraine “suffers in the dark.” After all, she knows firsthand the value that can come with community.
Steering forward with passion and purpose
“We at AMF becoming more and more aware of the path that a patient walks because the person leading the foundation and representing the foundation is living that life herself. I feel honored to serve the community I am part of in this capacity. Together, we will fight for research, promising new treatments, and hope.”
AMF’s mission is “to mobilize a community for patient support and advocacy, as well as drive and support impactful research that translates into advances for patients with migraine and other disabling diseases that cause severe head pain.” The foundation does this through their Move Against Migraine campaign, a multimedia awareness campaign that aims to help individuals learn more about the condition and connect them to resources, doctors, researchers, and, most importantly, other people going through the same thing. The Move Against Migraine Facebook group is a resource where those with migraine and headache diseases to receive and offer support to others and ask questions without the fear of being judged by others.
Nim is deeply passionate about her work at AMF , yet she recognizes one downside to her personal success – from the outside she seems to be successfully managing an impressive career, in reality she still struggles to achieve her goals throughout the challenges of both her painful disorders.
She now lives with migraine symptoms for about a third of each month, and it’s never easy. But through the pain she’s learned an important lesson: You don’t have to follow a specific formula or path to contribute to patient advocacy. It is so individualized and every contribution and every story matters and that’s what’s most important. It all comes back to hope and not giving up.
“For individuals who are living with migraine disease or other disabling headache diseases, hope is hard to hold onto,” she shares. “It’s very easy to say ‘you don’t have my disease,’ or ‘you don’t know what it’s like to live with my pain.’ And that’s true, but there’s something similar in all of us: We experience this disease and we understand pain, whether it’s at the very extreme or the low end of that spectrum. We all can bond over that experience, and collectively move toward a movement that’s going to change the stigma and change the experiences for the individuals after us.”
American Headache Society: americanheadachesociety.org
American Migraine Foundation: americanmigrainefoundation.org
International Headache Society: ihs-headache.org
Move Against Migraine: americanmigrainefoundation.org/move-against-migraine
National Kidney Foundation: kidney.org