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

Told to Nicole Audrey Spector

I was in my mid-20s and working in a demanding but totally satisfying job at a large nonprofit in New York City. In addition to dedicating myself to my career, I was also active in physical exercise, had an active social life, and had a deep 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 started. Maybe it was that they finally reached the point where they couldn’t ignore it. With this disease, it is difficult to define precisely when it all started.

I was incredibly tired all the time. He developed a rash on his face (known as 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 see my primary care provider, who ran some basic blood tests that revealed my vitamin D levels were worryingly low.

“I think you have lupus.”

That’s not what my PCP said. Those words came from my great-uncle, a renowned rheumatologist who actually pioneered lupus testing.

Almost immediately I felt in my gut that he was right. I moved forward with testing with a rheumatologist and received the formal diagnosis. I had lupus.

Learning that I had an autoimmune disease that can cause a variety of horrible symptoms and be fatal if left untreated was devastating. At first I felt a strong sense of hopelessness and even guilt. Had I done something to trigger the onset of lupus? Was I at fault? Would I ever be anything more than a person with an incurable disease that could limit my life?

I was put on drug infusion therapy which was fairly 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, lupus changed my life forever.

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

Although devastated, I was lucky enough to start working part-time for a family member. This helped my family financially and also gave me a way to stay connected to the world beyond chronic pain, brain fog, and fatigue.

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

I dove deep into ways to cope with stress and find balance. I started meditating, a practice I continue to maintain. I repeat my mantra, “Thank you for my healing,” over and over again. I also hugged functional medicinewhich has been tremendous in my healing journey.

I started reading everything I could get my hands on about lupus and learned to overhaul my diet to eliminate foods that can trigger flare-ups. I also learned to avoid the sun and now put on SPF-everything when I have to face it.

Lupus can be a very isolating disease, so it has been important for me to find a community with other people living with it. I have built incredible friendships that I would never have formed if I had not been diagnosed with lupus.

Over time and with medication therapy, my symptoms have diminished, but I never give up the quest for self-healing.

After moving from New York to Maryland, I found work at a nonprofit wellness center and returned to fundraising part-time. I accepted all 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 obtained a comprehensive nutrition education and became a health coach.

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

And I started a family. I have two children now. Both of my pregnancies were healthy and surprisingly, I felt better than ever when I was pregnant!

I have grown a lot as a person since my diagnosis and I think I grew more than I would have if I had not been diagnosed with lupus. I prioritize rest and self-care. I say no to social activities that will destroy me and yes to those who want to help, including my husband, who gives his all as a partner and as a father. Also, I don’t avoid talking to doctors. My goal is to be an active participant in my health plan, rather than an inactive passenger on a mystery ride.

I am very lucky to have been diagnosed with lupus so quickly. Many people suffer years of symptoms without answers. Many people do not realize that they need to seek the care of a rheumatologist specifically.

I hope that anyone who thinks they may have lupus will see a rheumatologist immediately. Beyond that, I want you to know that I’m not sugarcoating it: lupus is brutal. It is a cruel and relentless disease. But I promise you, as I’ve learned to promise myself through years of self-care and self-healing practices: if you have lupus, it’s not 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 have found that to thrive you need to work on truly loving yourself. We all seem to know this when we talk about self-care and self-defense, but in reality we may be struggling. doing he.

And if you are struggling, remember that there is an army of support. We are here for you and together we will get through this.

Resources

Lupus Foundation of America – Support Groups

This educational resource was created with the support of Novartis, a member of the HealthyWomen Corporate Advisory Board.

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