January 24, 2019
When I heard of my sister’s lupus diagnosis I was confused about its origins and its implications, and to this day I still am.
I dove into internet wormholes with WebMd articles, twitter posts and online support groups published by young people living with lupus. All of this information without an understanding of the disease and how it could or would be cured had a dizzying effect.
My family and I felt helpless. I was unsure of how I could help in any way but realized that I had no place being frustrated with a disease affecting a loved one. Learning to support meant I didn’t get to be mad, sad or flustered. When I acknowledged I personally, would not cure the disease I started to think about what I could do to be of service and support. That shift has shaped the way I interact with my sister and the lupus community.
I still struggle to find my place in the role of a supportive brother. My goal is to listen, ask if I can be of aid, and then determine how. Sometimes I can’t do anything and I need to accept that. Sometimes I push and that does not help anyone.
I’ve learned that the little considerations can go a long way. My sister, and many others living with lupus, often has low tolerance to the sun. Instead of denying her experience and pressuring her to push through, my mother and I decided to get bucket hats to protect from the sun. These hats became our team uniform for the Walk with Us to Cure Lupus and remind my sister that we understand the challenges she faces. We embroidered our fundraising team name, Unconditional Love, on the hats and gave them out as thank you gifts to donors to our Walk team. Soon after the walk, we decided to sell the hats and donate all proceeds to the Lupus Research Alliance.
We are thrilled that this small gesture that was a direct result of trying to help with a specific need, grew into a larger vehicle to advocate and support the LRA and people living with lupus.
Besides these very personal, direct acts, involvement with the Lupus Research Alliance Young Leader’s Board had enabled me to advocate for awareness and patients’ rights on a larger scale. Between raising money to support the search for the cure, helping at events aimed at increasing awareness, and advocating for patients in Washington D.C., the LRA has helped guide and nurture my desire to help.
My family and I are so thankful for making us feel that we are not alone.