Jeannette Rotondi has had migraine disease for 11 years. Shortly after they began, her migraine attacks became intractable. Jeannette was newly married, had just purchased a home, and was working toward her clinical licensure as a social worker. Life came to a halt, including her career and plans for a family. “I was completely debilitated and isolated from the life I was building,” Jeanette recalls. Except for her husband and parents, she felt alone and it greatly impacted her mental health. Nothing she tried was working to decrease the frequency and severity of the attacks.
Thankfully, she was one of the lucky people who are referred to a headache specialist. Six years ago her specialist was able to help decrease the attacks to chronic, less disabling attacks, with better triptan efficacy. “What saved my mental health during those early years was finding a community and learning how to advocate for myself and others,” Jeannette stated. Although she had support from her husband and parents, Jeanette believes we need more community support on the journey with migraine disease, such as a care team, advocacy volunteers and peer support.
In 2013, Jeannette found the organization Chronic Migraine Awareness, Inc. “They offered a caring environment, gave me a voice, and let me know I am not alone. Further, they gave me the opportunity to volunteer on migraine time. Their policy ‘Migraine Time’ helps people living with migraine to not feel pressured to meet hard timelines. CMA understands that you are volunteering your free time and that sometimes it just isn’t possible to advocate or put up that graphic on social media or deliver materials to doctor offices. Chronic Migraine Awareness is very thankful for any time you can volunteer for them,” said Jeannette.
Advocacy and Community
Jeannette believes that community is people with similar goals, traits and ideals. “Advocacy helped me unite with people who not only have migraine disease or care for someone that does but who have similar goals, such as, investing in change and supporting others through service,” stated Jeannette.
The sense of community was one of the things that drew Jeannette to advocacy, along with the opportunity to be a catalyst for change and support through personal challenge. Jeannette believes community provides empowerment and strength, as well as understanding and empathy. “Community teaches us that we don’t have to endure this journey alone. Community allows us to lift up those who are at a rocky point on their journey and also receive hope from those who have experienced a triumph. Community shows you that you are not alone. It is especially wonderful when some of these relationships blossom into friendship,” says Jeanette.
Her advice when you begin looking for your community is to find a place where people not only have similar experiences but have similar ideas, values and goals. In her advocacy community, it was flexibility, actions and programs that were patient-centered and compassionate. It was finding an encouraging environment and a place that will hold a space for the hurting with acceptance. Most of all it is teamwork, what one person has to offer is no better than what anyone else brings to the table, Jeannette found this to be true in the community at CMA. Each volunteer advocate or staff member acts with compassion and for the greater good.
Currently, she serves as the volunteer Director of Development with Chronic Migraine Awareness Inc, and what she found within that community fits with the definition of community as stated by Coretta Scott King, “The greatness of a community is most accurately measured by the compassionate actions of its members.” Jeanette believes we need community on this journey with migraine disease for strength, for encouragement, and to receive and instill hope. Community helps to share knowledge and support and to work together to create change. When you find your community, you find hope and the knowledge that you are never alone.
”Alone, we can do so little; together, we can do so much” – Helen Keller.
by Kristen Estep
Chronic Migraine Awareness, Inc.