I keep hearing people talk online about “living well” with a chronic illness or being a “healthy chronically ill person.” How can I live “well” when I don’t have any control over what my body does or doesn’t do? It’s very confusing and it feels like I’m still being blamed for being chronically ill. Can you discuss the perception that an individual with a chronic illness can be healthy? -Matt
Choosing to live well with a chronic illness isn’t easy. But after living with systemic lupus for more than 9 years, I now know that taking this step is paramount to improving life with a chronic illness. It takes keen self-awareness, patience, and forethought to actually choose “well”, but it can be done, and the results are worth every bit of effort you put forth.
What does choosing “well” mean? It means acknowledging that you have an illness that is chronic, one that won’t go away, no matter how much you want it to. It means accepting the fact that life may need to change because of that illness, and committing to do whatever it takes to improve your situation. It means declaring, “Yes, I have lupus [or whatever illness you have]. Now what can I do to make life with my illness better?”
For years, I didn’t realize I had a choice to make. I thought I was at the mercy of the disease – the symptoms, the side-effects, the medications, and the doctor’s orders. What I couldn’t understand is that every time I worked too long, refused help from a family member, or failed to push my doctor for an explanation, I was choosing poorly. I wasn’t doing everything I could to accommodate or understand my illness.
In fact, I was doing everything not to. I was fighting life, rather than living it. And I was choosing to do so. I was trying to ignore the disease, acting as if it wasn’t affecting me or my ability to function, perhaps hoping that it would just go away. But chronic illnesses don’t just disappear. We must embrace the disease in order to make it as inconspicuous as possible. And we do that by choosing “well”, each and every day.
Sara Gorman was diagnosed in January of 2001 with systemic lupus at the age of 26. Determined not to let a chronic illness dictate her plans for the future, she refused to admit that her busy lifestyle and indomitable attitude were hindering her chances for a long, productive life. After four years of running her body into the ground, she decided to make it her top priority to start living well, despite lupus. The steps she took to regain the health and wellness she’d lost are outlined in her book, Despite Lupus: How to Live Well with a Chronic Illness. Letting go of her career, postponing plans for pregnancy, and cutting off her hair (or what she had left) are just a few of the monumental, courageous steps she took to reach her goal of living well, despite lupus. A native of Indiana and graduate of the University of Notre Dame, Sara resides in Alexandria, Virginia with her husband, 1 year old daughter, and pug dog.