Catherine H. - Diagnosed at age 22
I was diagnosed with lupus in January 2022. Like many others, the road to diagnosis was painful and confusing. I was an athlete with endless energy who suddenly struggled to walk up a flight of stairs. I had misdiagnosed chest pain for 2 years that progressed into a life-threatening pericardial effusion and pericarditis. Even after two hospitalizations, no one knew why I was experiencing an array of seemingly disjointed symptoms. I didn’t have the strength to get out of a hospital bed and I didn’t even recognize myself. I did not believe I would ever get better.
One of the most challenging aspects of lupus is learning how to alter your daily life in order to manage an unpredictable disease. One day you feel fine, but the next it’s challenging to complete daily tasks. I struggled accepting help and the fact that I would never go back to who I was “before” lupus. However, life can still be enjoyable even if it’s not the way I imagined it. It’s easy to think about what I had taken away from me–2 years of college were spent just trying to get through the day. As devastating as it was, I gained gratitude for the little things and am happy just to be alive. With finite energy, I became intentional about how I spend my time, which is a gift.
Currently, I manage my lupus with medications and lots of support from family and friends. I primarily deal with joint pain, muscle pain, fatigue, and rashes. One thing that gives me hope is the kindness I have experienced. I am confident that I would not have made it through this without such a strong network of love and support. Words of encouragement, a text from a friend, or a loved one just sitting with me through a challenging day helps me immensely. Lupus can be isolating and I’m glad to have people who lift me up, are patient with me, and remind me why I’m still here. You truly never know the impact you can have on someone. Never ration your kindness. I have also found that there is great strength in reaching out to others for support. We’re not meant to exist in isolation, so lean on people you trust. I hope to give back by giving someone else hope that they can get better, especially when it seems impossible.