Living well with lupus: One woman’s journey
The day before I had completed a year of intensive study by taking (and passing) comprehensive exams, a critical point in my path toward earning my Ph.D. I was jubilant and exhausted. Normally, I might have shrugged off a little discomfort after a tiring semester, but this was different, deeper and more intense than anything I had felt before.
By August, right before I was to begin law school, I was diagnosed with Systemic Lupus Erythematosus (SLE) or just lupus.
My diagnosis came so quickly due to the persistence of my mother with the doctors at my HMO (she insisted that they keep seeing me until I had an answer), my family history of the disease, and the fact that I presented with so many of the symptoms so quickly. I had the arthritis, fatigue, skin rashes, mouth sores, high positive ANA test, pleurisy, hair loss, and photo-sensitivity.
The diagnosis was a relief and also terrifying. I had watched a brave aunt struggle with the disease for many years. Through her example, I knew it was possible to accomplish much with SLE, but I was unsure whether I had the strength to do what she had done.
And also, lingering in the back of my mind, appearing mostly in my nightmares, was the story of my great aunt who had died from the disease prior to the use of life-saving steroids. It is an illness that is very treatable, but nevertheless holds real dangers.
Anyone who has lupus will tell you that it can also be a depressing diagnosis and condition. Both the disease and the treatments can make you feel crummy, look different, behave differently, fall into despair.
I have both gained 30 pounds in a couple of months and withered down to frailty, my afro-textured hair has turned straight, or fallen out. I have, at times, been barely able to speak because of the large ulcers in my mouth.
I spent most of my first year of law school in bed, barely able to move and devastated when not a single “friend” in my section would share his or her class notes with me.
But I made some critical decisions early in my diagnosis. I decided I was going to learn everything I could about my disease from books and articles. I decided I was never going to assume that any rheumatologist knew my body better than I did. And finally, I was going to always listen carefully to those who had something to teach me about the disease — either because they’d had it, or they knew about it. Not all the input I got was useful. But some was golden.
An elderly woman with SLE told me “The best way to live a long life is to get a chronic disease and take care of yourself.” I have lived by that piece of advice ever since. What I took from what she said was that an autoimmune disease is a constant reminder. Every time you fall off the wagon of ample sleep, good nutrition and stress management your body will give you a signal to get back on track and you’d better heed it.
Within six months of my diagnosis I began acupuncture and vitamin infusions. At various points in the past 13 years I have also used massage, craniosacral therapy, yoga, dietary supplements, Chinese medicine, thoughtful nutrition (using a modified version of the Okinawa diet), and meditation as ways to treat my illness. I would never replace conventional medicine. It is absolutely necessary to go to a physician on a regular basis when you have been diagnosed with lupus. But I will always credit complementary health care for allowing me to maintain a high quality of life with Lupus. It has kept my body as strong as possible in order to fight the disease, and it eases symptoms phenomenally.
About 10 months ago, my doctor, who blends conventional and holistic medicine, had me do IgG food hyper-sensitivity testing. After eliminating foods to which the tests shows I had hypersensitivity to, I have seen at least a 75-80% reduction in arthritic pain.
But it is not just health care practitioners and eating habits that have allowed me to live well with Lupus. It has also been a product of understanding and working on the relationships in my life. Lupus is one of those diseases that can breed insensitivity very easily. Often a person with SLE does not “look” sick, and therefore people around him or her will expect that they have no impediments. On the other hand, some people will assume that you are incapable of living a normal life. You can often live a normal life with SLE, with some modifications. But you have to remember not to try to meet the expectations of those who assume you are able join in any and all activities as long as you are not flaring, nor can you allow anyone to put you into a little “sick box.”
I continue to learn my limit. But by now I know that I sometimes have to disappoint my friends and family.
I cannot talk on the phone at all hours of the night because I have to rise early to care for my kids. I cannot jet set across the country non-stop because the air pressure changes on airplanes usually leave me with a day or two of arthritic pain. I can’t be around a lot of toxic people. Nastiness, mean-spiritedness and cattiness are not part of my healthy living plan. I was astonished by the number of people who said really mean things to me once they learned about my disease. But I consider myself fortunate to have learned their true colors.
I also had to make some very difficult decisions about curbing relationships with people who I genuinely like but who drain my spirit. And I haven’t yet fully recovered from the friends who decided not to be my friends anymore after I got sick, but I know it is for the better that they aren’t in my life.
It has been my great fortune to have parents, a spouse, extended family and friends who will listen and accept what I tell them about what I need and what my limits are. This is not easy for them, I know. It is painful to watch a loved one suffer and sometimes there is a tendency is to lash out at the very person who is suffering.
For those of you who have loved ones with SLE, I urge you to do whatever you can to restrain yourself from expressing anger, frustration and insensitivity towards that person and instead seek their assistance in figuring out how you can provide support to him or her. Also, you must find your own support network if you are caring for someone with SLE.
In the 13 years since I was diagnosed I completed a Ph.D. and a law degree.
I have pursued a successful career as a professor. I got married, had two beautiful sons, and am living in a vibrant and nurturing neighborhood in Philadelphia. This was possible because of my efforts and those of the people who have had to courage to continue loving me well through this disease.
Recently, a family friend who is a physician told me, “All disease is a metaphor.” When I think of SLE, it seems to be a metaphor for all of the things that all of us do in our lives to attack ourselves- we run ourselves ragged, we internalize others’ meanness, we put ourselves down, thinking we aren’t ever good enough. When SLE and the other autoimmune diseases allow for your immune system to attack your body, it can seem as though everything is stacked against you.
But I believe that those of us with SLE bear a special gift because we have the opportunity to devote ourselves to being models for undoing the self-attack by practicing self-care.
Not everyone with SLE is able to follow his or her dreams. It is an unpredictable disease. It is not enough to plan, you have to be flexible enough to change the plan when your body demands it.
I am living well with lupus.