Mistakes, pitfalls and lessons: Chatham woman’s battle with lupus inspires memoir

PITTSBORO — It used to be a fascination. Nothing more than an interesting phenomenon to be studied in books and classes.

Then, it came for her.

Dr. Niranjana Parthasarathi was in medical school at Georgetown University when she was diagnosed with lupus. The debilitating disease soon consumed her life. She was just 23 when she was diagnosed.

“I was determined not to allow lupus to interfere with my plans,” she writes. “The delusion of the invincibility of youth helped me suppress my fears and focus on my life’s work.”

In the 37 years since, Parthasarathi — who lives in Fearrington Village — learned to live with the disease. She graduated from Georgetown University, the Medical College of Virginia and completed residency training at the University of Pittsburgh Presbyterian Hospital. She then served as a professor of internal medicine for 20 years at the University of Cincinnati, where fellow physicians named her one of the “Best Doctors in America” each of her final eight years in clinical practice.

As a physician with lupus, she brings expertise and a unique perspective that has enabled her to thrive despite the ravages of the disease.

Now, she hopes her accounts in her book “Lupus: In the Jaws of the Wolf” will aid other chronically ill patients and ease their paths forward. To help that mission, all proceeds from the sale of this book will go to the Lupus Foundation of America and Lupus Research Alliance.

The title comes from the translation of the disease — lupus means wolf in Latin. So, lupus patients know the ravaging nature of the disease, which ranges from mild symptoms to sudden death.

The book offers practical, day-to-day disease management advice along with research, expert opinion and recommendations from Parthasarathi’s personal experience. It includes strategies for handling difficult emotions, accounts of inequities in the healthcare system and how they impact the chronically ill.

The following conversation with Dr. Parthasarathi has been edited for clarity and brevity.

What inspired you to write this book? What do you feel like people have to gain from reading your experiences?

I was diagnosed at the young age of 23 and have now been living with lupus for 30-plus years. As a doctor, I also have an interesting insight into the ways this disease can ravage the body.

I saw firsthand how tormenting and awful this disease could be when I was in medical school and another student a few years older who I was interning with died of lupus during her internship.

Fortunately, I didn’t have any major organ problems, and it seemed that my symptoms were relatively mild. My rheumatologist at my medical school did encourage me to go ahead and pursue whatever I love, which is internal medicine. I feel fortunate enough to have relatively minor symptoms compared to others, and I felt that my experiences and lessons with this disease could be valuable to other lupus patients and those struggling with chronic illness.

When I moved to Chatham two years ago, I started journaling a lot more. It was during that process that I sort of had an “aha moment” where I decided I needed to share what I learned. Then I was talking with a friend who works in the Cincinnati Children’s Hospital who works with young lupus patients. She told me “You know, my teenage patients would be so inspired to know it’s possible to have a life beyond this illness that isn’t so discouraging.” 

You describe an intense lupus flare-up when you were 50 years old. What sort of emotional turmoil did that flare-up cause, and how did you cope with it?

That flair was pretty life-threatening. I had multi-organ disease, kidney failure and my immune system was attacking my red blood cells. I had to enter chemotherapy and receive blood transfusions which resulted in a lot of respiratory problems. Because of all that I was disabled from full-time work.

One in five disabled Americans is disabled because of lupus and I feared I could become part of that category.

But since then, it forced me to think about how enigmatic this disease is, even to rheumatologists and experts. There’s a lot that’s unknown. I’ve thought to myself, “I really wish that I could share some of what I’ve learned.” And some of what I’ve learned is from my mistakes like working too hard — the way increased stress causes lupus flare-ups. So, I want to urge other patients to learn from what I’ve discovered the hard way.

Not only did it affect my employment, but it also affects personal relationships — with spouse children, friends, etc. — because it’s extremely unpredictable and variable.

It’s hard to always honor commitments. Lupus challenges our families in different ways, and I’ve learned a lot about how to cope with those aspects. It challenges our sense of personal identity and threatens our sense of personal identity because we may no longer be able to do what we love.

How did your position as a doctor impact the way you viewed your experiences with your condition?

Doctors like to view themselves as superhuman, but struggling with this disease made me realize I can’t force myself to lead that lifestyle. ​​It was very psychologically difficult for me to be in Cincinnati and unable to continue my practice.

I’d go to the grocery store, and many times I’d bump into a patient, and they’d say, “When are you coming back to work Dr. Partha? We miss you.”

I felt and still feel a lot of guilt about leaving my patients behind. It’s still quite emotional 10 years later.

Medical students are notorious for saying they have whatever they’re studying. And so originally

I was in denial about the disease. Being a doctor gave me sort of tunnel vision about the whole thing.

Now I can look back and recognize that being a doctor gives me a certain compassion, empathy and perspective for patients who are suffering from this disease. It’s something many doctors, even those studying lupus, often lack.

While the book is about your experience, you include several snippets from your husband, Dan, who shares his own emotional testimonies through your struggles with lupus. Why was it important for you to include his perspective?

I wanted to show this journey wasn’t just personal for me. The impact on our personal relationships is tremendously impacted by the disease. They can’t count on us to be able to do things as simple as go to dinner or a show because of the variability of the symptoms on a day-to-day basis. There’s a lot of frustration involved there that we need to talk about.

How do you see your lessons from lupus paralleled in other aspects of life? What sort of benefit does the book offer non-lupus patients?

The lessons are very timely right now because in many ways this disease can be similar to Long Covid. Both are invisible, autoimmune diseases. There’s been a huge increase in these invisible diseases.

I think the rise of these diseases raises important questions about our environmental factors. What are the triggers for diseases we cannot see? I think that’s the public health question of the day we need to be answering.

Writing this book also showed me the ways many of us tend to put ourselves second. We tend to be so critical of ourselves. The way I was trained, and many physicians and other demanding professions are too, is that you put yourself second and don’t worry about your personal feelings. In writing, I realized the sort of self-destructive stoicism that takes and how it’s toxic in many ways.

There’s so much to cherish about life even in the presence of suffering.

Reporter Ben Rappaport can be reached at brappaport@chathamnr.com or on Twitter @b_rappaport