When I was diagnosed with systemic lupus, I had been married less than six weeks; I was at a high point in my career in television production, and I had no interest in letting a chronic illness upset my plans for the future. Therefore, I refused to let it do so. Yes, I was stuck with a confusing, chronic illness that was capable of inflicting debilitating pain and making me suffer miserably, but I decided to fight my way to wellness. I down-right revolted. I refused to give in to the disease, kicking and screaming every time lupus tried to assert herself. I thought my best defense was to deny the fact that I even had it, living with complete disregard to its limitations.
When I felt rundown or exhausted, I pushed on. When my joints were achy and swollen, I convinced myself they weren’t and kept on moving. There were days when I was stuck in bed, severely sick and immobile, but most days, I just weathered the symptoms the best I could. I thought a positive attitude and an indomitable spirit would be the keys to coping with the physical and mental pain. If I didn’t show any signs of weakness, lupus would take the hint and move on to someone more susceptible and defenseless. Those characteristics didn’t fit my profile, and I was going to do everything in my power to prevent lupus from changing me.
Unfortunately, lupus didn’t care how hard I tried to fend off her symptoms. The more I pushed her away, the more she raged on. My symptoms worsened, and my health declined severely. I continued to believe that my determined efforts could be productive, if I just pushed a little harder. But my body didn’t have anything more to give. The countless medicines and pain killers, a blood transfusion, lung taps, multiple visits to the emergency room and a week in the hospital weren’t enough to keep my body afloat anymore. Unlike any other adversary I’d ever been up against, lupus is a potentially fatal, chronic illness, and I was losing the battle.
For four years, I desperately struggled to keep hold of the life I’d known (including a demanding, yet fulfilling career, busy social life, packed vacation schedule, invincible attitude), but my body couldn’t take it anymore. I was fighting life, instead of living it, and had resigned myself to the fact that I would be lucky if my body held out much longer. I told myself I wasn’t giving up; my body was just giving out, and there wasn’t anything I could do about it. I began thinking about the things I should do before I died: work less; live more; appreciate my family; enjoy time with friends; be more creative; attempt to fulfill my personal, life-long goals in the limited time I had. The all-encompassing objective was to realign my priorities and get the most out of life, while I still could.
But as I crafted my plan for a premature death, it seemed I was making an even more compelling case for life. Why shouldn’t I get my priorities in line right now, not for death’s sake, but for the benefit of my future? Did I really have to work as much as I did, or was I letting pride and stubbornness rule my decision to do so? As committed as I was to acting as if lupus had left me unaffected, who was I keeping up appearances for, and was I profiting from the charade? I wanted to travel the world, have children, and enjoy my hobbies, but if I didn’t start taking care of myself, I’d see none of those things come to pass.
It took me far too long to connect my driven mentality, an overactive lifestyle and my continued decline in health. While I wasn’t preemptive in my efforts, others can be. That’s why my book, Despite Lupus: How to Live Well with a Chronic Illness makes the connection evident within the first few chapters. Readers will see how past lifestyle choices have contributed to their illness and why the choices they make in the future can propel them into a permanent state of well-being. They’ll learn why they make the decisions they do and how to make better ones moving forward.
Once I realized the error of my ways, I started focusing on making better decisions for myself, ones that would prevent my lupus from flaring up. I knew if I was healthier, I’d be more mobile and have more energy. I would enjoy life like I used to. I could spend more quality time with friends, enjoy evenings out with my husband, and be the spunky, happy wife, sister, friend and daughter I once was.
Taking ownership of my life no longer seemed futile. It seemed like I could actually improve my life with lupus, if I just chose to do so. I could actually start living well, despite lupus.
During the next two years, I downshifted almost every aspect of my life. I quit my job and made it my number one priority to get myself back in good health. I canceled vacations, passed on social engagements, and incorporated a 2-hour nap into my daily routine. Some days, the decision to live well seemed just as difficult as the suffering I had already experienced. But in most cases, it proved to be the greatest decision I had ever made.
I learned all I could about the disease. I attempted to understand its patterns and adjust to its needs, making changes and sacrifices along the way. My life was different, for sure. But no doubt, it was better. After all, I was living well. Before, I was merely surviving.
Ever so slowly, the pain, swelling, and fatigue began to subside. My failing organs and deteriorating spirit, both of which I thought were permanent fixtures in my life, started to heal. Hopelessness, despair and anxiety were replaced with confidence, happiness, and serenity. I had been trying so hard to extricate the disease from my life, I had failed to consider the positive effect of incorporating (and accepting) it as part my life’s master plan. I began to see just how good my life with lupus could be. And so can you.