I was a workaholic; I don’t have a hard time admitting that. Part of me was proud of my work ethic — after all, I was dubbed “Hurricane” because I worked circles around everyone else. Now I have lupus, and fatigue is a big part of battling this disease; it leaves me worn out even if I’ve done nothing. And sometimes I even wake up exhausted. For some of us, the condition is so aggressive that working in the traditional sense is no longer an option. This is my fate. When you have chronic pain and fatigue and are told to avoid the sun, selling real estate in Florida becomes a memory.
I received this news at age 46. Most people would consider it a blessing to be told, basically, to retire at 46. I might have thought the same thing at 43, but when I received my diagnosis, it felt like a life sentence of torture. I have worked since then to generate some income to take care of myself because I don’t receive any financial assistance. But I can no longer work in the way that I had grown to love.
Over the years, I have experienced mental, physical, and emotional changes. One of the recent shifts was the feeling that I had no purpose. I know I can attribute some of that to the depression accompanying this battle. Depression involves looking back, and that perspective doesn’t serve me well. I previously believed that I was contributing and now I feel that the opposite is true. As I move forward, I spend a lot of time on my sofa, continually reevaluating my thoughts and feelings. Along with the belief that I have no purpose, I feel like a lazy bum. People tell me that I am still doing more than most: I sew, host a coffee gathering, teach online, blog, and create videos — and yet I still feel useless. I realize that these feelings come from comparing my previous identity as a physically active person to my current status. However, I should recognize that I am still engaged, albeit in different ways.
I recently took a trip to the United States. I didn’t tell my family about the precise reasons for my visit — I said that it was a “brain break.” When I arrived at my daughter’s place, I shared the real reason for my trip: I needed to be in a place where I was loved and allowed to be me. By sharing my feelings, I learned a few things.
I provide support for my kids and strength to those around me. When I arrived home, one of my old military friends came to visit. She told me that my experience has encouraged her to do things and make provisions in her life that she wouldn’t otherwise have considered. I get health updates in my inbox from various people. Many have told me that the information I share has helped them to change their eating habits, and given them suggestions about talking to their doctors and the courage to advocate for themselves. A few have moved abroad because of my experiences. They share their health updates with me because they feel that I am a part of their team.
And here was I thinking that I was no longer making an impact because I wasn’t physically showing up. I’m learning that I am still helping others. When I feel that I have no point or purpose, trying to fill my time and space in a fulfilling way isn’t easy — particularly when I am accustomed to working and solving problems. Now I realize that believing I matter and have something to contribute is vital to my well-being. While my version of being useful involved a lot of activity, I’m learning that creating videos, writing columns, and sharing my experiences with others is another form of usefulness.
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.