Background/Purpose: My story started as one of disbelief in 2009 with my Lupus diagnosis. How could a woman in the prime of her career be diagnosed with a disease with no cure? Being a female in a technical field, when I heard my diagnosis, I thought fix it. When I heard there was no fix, I was taken off guard. This disbelief had to quickly turn to how can I live well with this disease. It has been a journey, but a grateful one of self -discovery. Although this disease has caused me to be unable to work in my profession, brought about a myriad of other conditions and co-morbidities, I have discovered that I am resilient, persistent and a warrior.

Intervention:

Navigating such a complex illness that drastically changes your life is no easy feat. One must adjust and accommodate to a “new you” in the process. Managing and adhering to treatment plans in coordination with my rheumatologist and other specialists is a way of life. A part of this new life led me to adding additional tools to my toolbelt in order to live well.  One of which was attending a lupus support group. This opened up a whole new world of meeting people like me. They understood and connected over everyone’s journey.  My involvement led to becoming a support group facilitator. This group has developed into the largest lupus support group of the chapter.  In this role, I continually serve as a conduit to bring information to attendees to encourage them to be empowered, engaged, educated and enlightened on their journey with Lupus.  Facilitation has developed into advocacy. My voice as a patient to raise awareness, educate others and advocate for policies has been monumental. I have seen on a national and local level, the results of advocacy efforts and the ability to effect change.

Maintenance:

My role as a support group facilitator and advocate has spawned continued education and learning. The sustained need to be engaged in your healthcare and total wellness are paramount. Doctor patient relationships have evolved into partnerships. Raising my voice through advocacy has served as a catalyst for others to raise their voices as well. Support group efforts have enlightened me and other patients on their road to self- discovery with Lupus. Promoting awareness for Lupus remains a key focus on this path. Advocating through sponsored events and meeting with both local and national political representatives still provides the ability to foster change.

Quality of Life:

The people, experiences and knowledge I have gained on this path with Lupus have been invaluable.  My service to others through my support group facilitator and advocacy roles has not only improved my quality of life but helped other patients as well. The expansion of my network through various engagements and forums has fostered additional relationships with other advocates, industry experts and increased doctor patient relationships. All this has led to providing not only valuable information for myself but serving as a gateway to share and impact the lives of patients. I always get inspired and invigorated by the synergy of those of us living with Lupus who come together to provide compassion, insights and determination to continue to fight on this journey. It has been a gratifying feeling to know that my voice along with others can make a difference.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/impacting-change-through-facilitation-and-advocacy-for-lupus/