Before I was diagnosed with my rheumatic disease, I was constantly suffering from health issues such as pain in my feet, dry eyes, facial numbness and fatigue.
Once I received my diagnosis of Sjögren’s syndrome, I had to sacrifice some activities I used to enjoy, like running. But I credit my diagnosis with forcing me to incorporate healthy lifestyle choices into my everyday routine. Now, I make sure I get enough sleep, eat a (mostly) healthy diet, and practice my faith with community and through prayer. Although my capabilities have changed, I still love to exercise, especially tennis! All of these things are extremely important in helping me to manage my symptoms.
Since being diagnosed with Sjögren’s, I have a greater sense of appreciation and understanding for anyone with a chronic condition or different disability. Until someone has been affected by one, they will never truly understand an invisible disease. That is why conversations between patients and the public about the invisible disease stigma are extremely important right now.
The hardest part about living with Sjögren’s has been respecting when my body tells me to stop. I’ve come to realize that there will always be times in my life when I will have to remind my family and myself to slow things down. But when I do need to take a break or rest, I visually appear fine and for others outside of my family it may be hard to understand because to them, nothing looks wrong.
Living with Sjögren’s has taught me that those with rheumatic diseases may feel invisible at times but we are bigger than our illness and do not need to be defined by it.
I am so honored to be a part of RDAM 2020 as a patient spokesperson and hope that my story will encourage others to start having conversations with friends and family about rheumatic diseases and the invisible disease stigma that surrounds it.
One great first step with that conversation is to tell your story. People might not be able to physically walk a mile in your shoes, but they will at least have a better understanding of what it might be like.
Inspired by Jill’s story? Please consider sharing her video on social media using #RDAM or take a moment to tell us your story to help raise broader awareness of Sjögren’s and other rheumatic diseases.