Lupus is A Cruel Disease — But Through Living With it, I've Found Balance and Grace

As told to Nicole Audrey Spector

I was in my late twenties and working a demanding — but wholly fulfilling — job at a large nonprofit in New York City. In addition to dedicating myself to my career, I was also going full force with physical exercise, had an active social life and was deep in a relationship with my now-husband.

Life was hectic, but I felt happy. I felt alive. Then the symptoms began. Or maybe it wasn’t that they began. Maybe it was that they just finally reached the point of being unable to ignore. With this disease, it’s hard to precisely define when it all started.

I was incredibly tired all the time. I developed a rash on my face (known as a butterfly rash, which I later learned is associated with lupus) and experienced terrible joint pain and hair loss. My lymph nodes were swollen — a sure indicator to me that something was really wrong. I went to my primary care provider, who ran some basic blood work that revealed that my vitamin D levels were worrisomely low.

“I think you have lupus.”

That wasn’t what my PCP said. Those words came from my great uncle, a renowned rheumatologist who actually pioneered testing for lupus.

I felt almost immediately in my gut that he was right. I went ahead with testing with a rheumatologist and received the formal diagnosis. I did have lupus.

Knowing that I had an autoimmune disease that can cause a range of horrible symptoms, and be lethal if left untreated, was devastating. At first, I felt a sharp sense of hopelessness and even guilt. Had I done something to trigger the onset of lupus? Was I somehow to blame? Would I ever be anything other than a person with an incurable disease that can limit one’s life?

I was put on a drug infusion therapy that was quite new at the time. The medication ended up helping me a lot, but it took a while to have a healing effect. And even with that success, my life was still forever changed by lupus.

Because of how terribly tired I was, and because of the joint pain that was hurting my quality of life — I literally couldn’t move my hands well enough to make the bed — I was forced to quit my dream job. To say I was heartbroken is an understatement.

Though crushed, I was fortunate in that I was able to start working part time for a family member. This helped my family out financially, and also provided me a way to stay connected to the world beyond the shell of chronic pain, brain fog and fatigue.

But I needed more than just a job to feel like a real human again. I needed to feel something that wasn’t pain or exhaustion. And I needed to feel that my identity wasn’t locked up with my diagnosis — that I was still Roxanne.

I dove deep into ways to cope with stress and find balance. I started meditating — a practice that I’ve stuck with. I repeat my mantra, “Thank you for my healing,” over and over. I also embraced functional medicine, which has been tremendous in my healing journey.

I started reading everything I could get my hands on about lupus, and learned how to overhaul my diet to eliminate foods that can cause flare ups. I also learned to avoid the sun, and now gear up with SPF-everything whenever I have to face it.

Lupus can be a very isolating disease, so it has been important for me to find community with other people living with it. I’ve built amazing friendships I’d never have formed if I hadn’t been diagnosed with lupus.

Over time, and with the medication therapy, my symptoms have eased, but I never give up on the quest to self-heal.

After moving from New York to Maryland, I found work at a nonprofit wellness center and got back to fundraising part time. I embraced all of the teachings there — from yoga and meditation, to qigong and acupuncture.

I enrolled in our yoga teacher training and learned from my teacher and mentor, a neuroscientist, about the science and research behind these mindfulness practices. I also went on to get a comprehensive education in nutrition and become a health coach.

I now work with others who are uncovering autoimmune symptoms or have been diagnosed with lupus, as a certified yoga teacher and health coach.

And I built a family. I have two children now. Both my pregnancies were healthy and, amazingly, I felt better than ever when pregnant!

I’ve grown so much as a person since my diagnosis, and I believe I grew more than I ever would have if I had not been diagnosed with lupus. I prioritize rest and self-care. I say no to social activities that will wipe me out and yes to those who want to help, including my husband, who puts in his all as a partner and as a parent. Additionally, I don’t shy away from speaking up with doctors. I aim to be an active participant in my health plan, as opposed to an idle passenger on a mysterious voyage.

I am incredibly lucky to have been diagnosed with lupus so quickly. Many people suffer through years of symptoms without answers. Many people don’t realize that they need to seek the care of a rheumatologist, specifically.

It is my hope that anyone who thinks they may have lupus consult with a rheumatologist immediately. Beyond that, I want you to know that I don’t sugarcoat it: Lupus is brutal. It’s a mean and relentless disease. But I promise you, as I have learned to promise myself through years of self-care and self-healing practices: If you have lupus, it isn’t your fault — and you are more than just your diagnosis!

A life with lupus can still be beautiful, fulfilling and precious. But, in my experience, I’ve found that you need to do the work of truly loving yourself in order to thrive. We all seem to know this when we talk about self-care and self-advocacy, but we may have trouble actually doing it.

And if you’re struggling, remember that there’s an army of support out there. We’re here for you and we will get through this together.

Resources

Lupus Foundation of America — Support Groups

This educational resource was created with support from Novartis, a HealthyWomen Corporate Advisory Council member.

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