As told to Nicole Audrey Spector
I was in my late twenties and working a demanding – but totally rewarding – job at a large nonprofit in New York. In addition to being dedicated to my career, I also went full physical, 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 started. Or maybe it wasn’t to begin with. Maybe it was that they finally got to the point where they couldn’t ignore. With this disease, it is difficult to determine exactly 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 related to lupus) and experienced terrible joint pain and hair loss. My lymph nodes were swollen – a sure sign to me that something was wrong. I went to my primary care provider, who ran some basic blood tests that revealed my vitamin D levels were alarmingly low.
“I think you have lupus.”
That’s not what my PCP said. These words came from my great uncle, a famous rheumatologist who actually pioneered testing for lupus.
I almost immediately felt in my gut that he was right. I continued the examination with a rheumatologist and received the official diagnosis. I had lupus.
Knowing I had an autoimmune disease that can cause a range of horrible symptoms and be fatal if left untreated was devastating. At first, I felt a strong sense of hopelessness, even guilt. Had I done something to trigger the wolf’s appearance? Was I somehow at fault? Would I ever be anything other than a person with a life-limiting terminal illness?
I was put on a drug infusion treatment that was quite new at the time. The medicine ended up helping me a lot, but it took a while to have a healing effect. And even with that success, my life was forever changed by the wolf.
Because of how terribly tired I was and because of the joint pain that was affecting my quality of life – I literally couldn’t move my arms well enough to make the bed – I had to give up my dream job. To say I was heartbroken is an understatement.
Although devastated, I was lucky to be able 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 the shell of chronic pain, brain fog and fatigue.
But I needed more than a job to feel like a real person again. I had 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 am deeply searching for ways to deal with stress and find balance. I started meditating — a practice I’ve stuck with. I repeat my mantra, “Thank you for healing me,” over and over. I hugged too functional medicinewhich 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 might cause flare-ups. I also learned to avoid the sun and now prep with SPF-everything whenever I have to deal with it.
Lupus can be a very isolating disease, so it was important for me to find community with other people living with it. I have made amazing friendships that I never would have made had I not been diagnosed with lupus.
Over time, and with medication, my symptoms have subsided, but I never give up trying to self-medicate.
After moving from New York to Maryland, I got a job at a non-profit wellness center and went back to fundraising part-time. I embraced all the teachings there – from yoga and meditation, to qigong and acupuncture.
I enrolled in yoga teacher training and learned from my teacher and mentor, a neuroscientist, about the science and research behind these mindfulness practices. I also took a comprehensive training in nutrition and became a health coach.
I now work with others who are experiencing autoimmune symptoms or 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, amazingly, I felt better than I ever did when I was pregnant!
I have grown so much as a person since my diagnosis and I believe I have grown more than I ever would have if I hadn’t 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 gives his all as a partner and as a parent. In addition, I do not hesitate to talk to doctors. My goal is to be an active participant in my health plan, as opposed to a passive passenger on a mysterious journey.
I am incredibly lucky to have been diagnosed with lupus so quickly. Many people suffer for years with unanswered symptoms. Many people do not realize that they should seek the care of a rheumatologist, specifically.
I hope that anyone who thinks they may have lupus consults a rheumatologist immediately. Beyond that, I want you to know that I’m not sugarcoating it: the Wolf is brutal. It is an evil and unrelenting 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 it’s not just your diagnosis!
A life with a wolf can still be beautiful, full and precious. But in my experience, I’ve found that you have 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 actually have a problem act the.
And if you’re struggling, remember there’s an army of support out there. We are here for you and we will get through this together.
Resources
Lupus Foundation of America — Support Groups
This educational resource was created with the support of Novartis, a member of the HealthyWomen Corporate Advisory Council.
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Our real women, real stories are the authentic experiences of real life women. The views, opinions and experiences shared in these stories are not endorsed by HealthyWomen and do not necessarily reflect the official policy or position of HealthyWomen.
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