Get Into the Loop

Living with Lupus

Cynthia Jones has lived with lupus for more than 15 years. Born and raised in Laurelton, Queens and White Plains, New York, Cynthia is Jamaican-American (her mother was from Jamaica, W.I.) and was diagnosed with systemic lupus erythematosus (SLE) in 1989 at the age of 29. Fever, swelling of her fingers and hand joints, extreme fatigue, inflammation of the lining of her heart (pericarditis) and lungs (pleurisy) are several of the symptoms that, at age 44, she continues to experience. Cynthia's maternal great-grandmother, grandmother and mother all suffered from rheumatoid arthritis, and her mother underwent three kidney transplants during her lifetime. While it was not known at the time, her mother’s doctors now suspect that the renal failure was SLE-related. In this interview, Cynthia shares her story of life with lupus.

Describe what symptoms led to your diagnosis.

Cynthia: In 1989, I was under a great deal of pressure, both professionally and personally, and experienced chronic anxiety and emotional stress. I was in the midst of a divorce and was also starting a new business in the cultural-heritage tourism industry. I was traveling back and forth between Jamaica and New York and was tired all the time. My ankles, hands and finger joints were swelling and my hairdresser noticed that my hair was beginning to fall out. I was also experiencing some chest pain.  My mother suspected that I had developed rheumatoid arthritis as she had when she was 28 years old.  However, a doctor in Jamaica suspected that my symptoms were related to lupus. I was fortunate to have a definitive diagnosis in August of 1989 and was immediately placed on corticosteroids.

Did you know what lupus was before you were diagnosed?

Cynthia: I had vague information about lupus. I had heard of it but knew little about what the disease actually was. All I really knew about was the butterfly rash. I will never forget looking at my initial lab reports and reading the words “connective tissue disease” and “fatal.” I was utterly devastated because back in 1989 a greater percentage of young women did not survive beyond 5 – 10 years post-diagnosis.

How has lupus affected your career and personal life?

Cynthia: The first six months after my diagnosis my life just stopped. I was heavily medicated and in and out of the hospital. I had to give up my work in Jamaica, my apartment in Manhattan and move to my father’s home in Queens. When I was in the process of being diagnosed I was down to about 95 pounds. With incredible support from my family (especially my father), friends and rheumatologist, I slowly began to regain some of the weight and to reconstruct my life around lupus. I was severely limited in what I could do but was able to return to my business. As I tried to adjust to life with lupus, I eventually decided to pursue a master’s degree in international tourism at New York University.

What changes have you had to make to your life as a result of having lupus?

Cynthia: In 1990, I returned to Jamaica to help my mother, a former professor of education at SUNY Old Westbury, build her tour operation. By now I had developed a hypersensitivity to the sun and UV radiation, a major obstacle to my operational and site research responsibilities within the company. I would have to get up at very early hours to do site research and meet clients. We also had to outfit all of the touring vehicles with special UV-protection tinting and make numerous accommodations for my illness, extremely difficult and tedious but I did find ways to compensate. After my mother died in 1991 I submerged myself in the business, not knowing how to deal with the devastating grief I was feeling. I was now beginning to experience cognitive difficulties involving concentration, organization of thoughts and problem-solving. For several years these cognition problems were frustrating and frightening. While pursuing my graduate studies, the cognitive difficulties were almost paralyzing. Only with the intervention of my rheumatologist at the Hospital for Special Surgery, who helped me get into a unique cognitive retraining program called MINDFULL, was I able to learn compensatory cognitive strategies and techniques that are now helping me to complete graduate school and, hopefully, return to my profession.

What would you say to other young women suffering with lupus?

Cynthia: Learn as much as you can about the disease. Don’t depend on your doctor alone; get involved with a local SLE support group and learn to become your own best advocate. Education is really the key to meeting the enormous challenges of living with lupus. Nutrition is also very important as what we put into our bodies can really affect how we feel. We have to remember to treat our whole body, physical, mental and spiritual, with care and respect, the holistic perspective.

What is the biggest secret about lupus?

Cynthia: Life with SLE is still very much worth living, but you must be determined and remain vigilant in finding and creating your own path toward that living. You have much more power in your life than you might think.


Want to share your lupus story? Email lstegmaier@lupusny.org.

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