Lisabeth’s Journey: Empowerment Through Advocacy

“If you are struggling with autoimmune disease, become empowered– immerse yourself in reliable information from trusted sources, listen to your body, and document questions or concerns, surround yourself with a strong support team of family and friends, establish your own health care team of Doctors and providers that actively listen to you and collaborate in your care, and volunteer in some capacity to vest yourself in your disease community to make a difference.”

What has been your biggest challenge on your autoimmune journey?

The biggest challenge on my autoimmune journey has been having family and friends that still haven’t accepted that I have an invisible illness, lupus. I still get,” You don’t look like you are sick.” My nemesis: wicked temperature changes-they are my kryptonite.

What has been instrumental in helping you navigate and adapt to living with autoimmune disease(s)?

Reaching out to LADA for information and support, then becoming a volunteer and patient advocate has truly helped me navigate and adapt to living with autoimmune disease. Being responsible for accurate facts and data for my community requires holding myself to a higher standard. Advocating for myself, giving myself permission to ease up on myself for things that I can no longer accomplish as fast or at all, has helped tremendously. I’ve also been able to use that knowledge in navigating through challenging times, like my open heart surgery.

What advice would you give someone who is struggling with an autoimmune disease(s)?

If you are struggling with autoimmune disease, become empowered– immerse yourself in reliable information from trusted sources, listen to your body, and document questions or concerns, surround yourself with a strong support team of family and friends, establish your own health care team of Doctors and providers that actively listen to you and collaborate in your care, and volunteer in some capacity to vest yourself in your disease community to make a difference.

Why is it important for those who are living with a specific autoimmune condition to join together and raise awareness about autoimmune diseases as a category?

I was privileged to be part of the Lupus PFDD Initiative as a LADA Representative from its inception, providing my patient perspective. It was wonderful to witness firsthand the power of collaboration as the three national lupus organizations co-led this ground-breaking initiative to improve and accelerate the development of new treatments for lupus. In unifying as a community, we gathered data to drive research, heard one another to know we are not alone, and created an awareness that lupus needs to be addressed.