Background/Purpose: When I received my diagnosis in 2007, I had never heard the word Lupus before and had no idea what it meant. I don’t remember having any reaction to the news, because I did not know to be alarmed by the gravity of the situation. Newly diagnosed patients often cannot imagine the extent to which this health issue will take over their lives. I was diagnosed at 18 years old, while trying to juggle with young adulthood and an ambitious college career. I would soon discover that there was a lot to learn in managing a complex and long term condition like Lupus. In doing so I’d learn to raise my voice and help others raise theirs.

Treatment: Evolving as a chronic patient takes a lot of reevaluation on patients’ part of what their priorities are. It takes some time, and is an ongoing experience, to learn how to appropriately manage stress and energy levels, in addition of staying on top of a complex treatment regiment and coordinating with a health team of multiple specialists. Very often, patients also learn a lot about patients’ rights issues. I got involved in a support group as a quiet participant, observing and learning until I found my own voice. Pretty soon, and bolstered by the positive doctor-patient interactions with my rheumatologist and gastroenterologist, I became very vocal about patient-centered care and patient-centered research. My goals as I navigated this new life with chronic illness were to improve quality of life and make a better future for myself and for people living with similar conditions.

Maintenance: My background in research and education made it easier to piece together the medical jargon related to Lupus in medicine and research, and I have enjoyed educating myself so that I can educate others as well. As a result of this, I took a more active role in my care; my health and my quality of life have improved dramatically. My new-found drive to advocate on behalf of myself and others has influenced my personal health in a great way. Patients’ motivation can falter in the face of such a long term condition, and it often takes years to figure out the right approach that works for each person. As patients find their voices and stand up for their rights and the rights of patients like them, they may discover that their personal health also improves for the better.

Quality of Life: My advocacy sustains me, both as an individual and as a patient. I believe that it is very important to let patients know that they have a voice that they can use if they so wish. Patient education starts with the patient itself, then gradually evolves to benefit others. As part of a community of patients and patient advocates, we give each other support and encouragement, as well as medicine reminders and helpful tips for people living with Lupus. Additionally, I constantly seek to have conversations with doctors and health professionals on ways to engage patients and improve their quality of life.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/reclaiming-medical-autonomy-through-healthcare-advocacy/