By: Venus Williams, RDAM 2019 spokesperson, tennis champion and CEO of EleVen and V Starr Interiors
My journey to diagnosis was not an easy one. It all started with feelings of pain and exhaustion that impacted my ability to play tennis, a sport I have loved since I was a little girl.
Like many people living with rheumatic diseases, I struggled to get a correct diagnosis. It took six years of painful symptoms, doctor’s visits, and many unanswered questions to get a correct diagnosis. As my symptoms worsened, and I experienced increasingly dry eyes and mouth, hand swelling, numbness, and changes to the shape of my joints, I was finally diagnosed by a rheumatologist with Sjogren’s syndrome in 2011.
Getting diagnosed was a game changer for me. Once I knew what I was facing, I was given peace of mind and felt empowered to take steps to manage my rheumatic disease. Based on my journey to diagnosis and treatment, I have a few pieces of advice for others who are living with rheumatic disease:
- Share as much information as you can about what you’re experiencing with your rheumatologist – including your concerns. Rheumatic diseases are very personal and not everyone has the same symptoms.
- Don’t give up. Sometimes it can take a little while to find what works for you. Initially my first medications didn’t do much for the first six months. I communicated to my rheumatologist that I wasn’t getting better, so we tried something different, and that one worked.
- To get better, you may have to make other lifestyle adjustments. For me, this meant changing my diet to help reduce inflammation and flares and modifying my work schedule to get more rest. I used to love working late, but I can’t do that anymore. I need a certain amount of sleep to avoid adding to my fatigue.
Even though I still have tough days and a few symptoms that remain consistent, I’ve figured out how to take back control of my health – and my life – so I can return to the top of my game. My disease no longer holds me back from what I love.
I’m excited for the opportunity to partner with the American College of Rheumatology and its Simple Tasks campaign for Rheumatic Disease Awareness Month to help raise awareness and remind the millions of Americans affected by rheumatic diseases that you are not alone, help is out there, and it is possible to take back control of your life. I’m passionate about this, because I’m affected by it every day, and I want others to have the peace of mind I’ve found. Don’t give up. You can do this.