I found out the name of the thing that was torturing me in February 2016. I was told I was suffering from lupus. At that time, I decided that I had received a death sentence. It was torturing me in so many ways. I shared with my mom that I just didn’t know how to process what was happening. And when I was told I could no longer work, my thought was: What do I do now?
At 46, I hadn’t a clue what I should do. My kids had finally left home, the career I’d worked in for almost 20 years was over, and I had no real idea of what was next for me. I asked God the purpose of this disease. Many people ask why ― I never did ― I just wanted to know my purpose.
I lived in a new place, a city where I had no real connections, and lupus can be quite lonely. There are times when you can hardly move, let alone get out to socialize. I started sharing my story on social media. Initially, I planned on keeping my diagnosis to myself. After some serious thought, I used social media as a way to connect with others outside my door.
For years, I have managed to find the silver lining in pretty much every obstacle I’ve come across. Honestly, finding a silver lining in lupus has been a task. Since I’ve decided to be a joy junkie, I never thought about it really helping others. I have been sharing happiness pretty much all my life. Only recently did I realize my voice impacts not just my loved ones, but also perfect strangers, too.
Inside, I once felt that I had no purpose and no hope, and I had no idea what I was supposed to do. Now that I’m no longer a mother of small children, no longer gainfully employed, my thoughts have been: What am I to do?
I now accept that I am to use my voice to provide encouragement, not just for me, but also for whoever will listen. Some days, I definitely need to feel encouraged. I have moments of sadness, hopeless feelings, and I wonder why I am still here when all the things we are traditionally accustomed to are no longer a part of my life. I have come to learn that being far from my loved ones, no longer having a traditional job, and feeling like I am no longer needed is a part of my journey. It is what allows me to speak to others who are feeling what I am feeling and we all learn together that we can, and must, carry on.
I know people look at me always smiling, and they think it’s natural. But it’s a fight, a choice I make daily. I pray that I am making a difference and that I am helping not just myself, but others as well. Today, I struggle with finding my joy, but I firmly believe I have indeed found my voice.
Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.