As Lupus Awareness Month concludes, The Daily Scrivener takes a closer look at this often misunderstood autoimmune disease through the eyes of two individuals who live with it every day. Their experiences shed light on the physical and emotional toll of lupus, as well as the determination and community that sustain them. This article shares their journeys, offering insights and reflections as we close out a week dedicated to raising awareness and fostering understanding.
Lupus is a disease that many have heard of remotely but don’t truly understand. According to the Lupus Foundation of America, 1.5 million Americans have lupus. Of those diagnosed, 90% are women. Not only does lupus mostly affect women, but Black women are particularly vulnerable to more severe symptoms and poorer outcomes than their counterparts.
On a daily basis, managing lupus requires juggling multiple medications, side effects, and the constant fatigue that comes with autoimmune disease. Emotional and social barriers are equally significant — people with lupus often deal with the burden of explaining their invisible illness to others while also contending with work and family responsibilities that may not accommodate the fluctuations of their health.
To bring these statistics to life and add a human face to the data, The Daily Scrivener spoke with two remarkable women who are living with lupus. Their stories offer a glimpse into the challenges and triumphs that often go unseen, painting a vivid picture of what it truly means to live with this disease. Here’s what they had to say:
Vanessa
Vanessa was diagnosed with lupus in 2012 after she started to experience abnormalities on her skin. After seeking treatment from her primary care doctor, she was referred to a rheumatologist who officially diagnosed her with lupus. She was shocked by the diagnosis.
“I was a bit confused because nobody in my family has lupus,” she said. “It made me look at life differently.”
Since her diagnosis, Vanessa has worked to find a delicate balance between managing her condition with medication and lifestyle changes, and navigating the side effects of the treatment itself. She has faced challenges like hair loss, exhaustion, and changes in her eyesight. Despite these obstacles, she remains vigilant with her medication and doctor’s visits, determined to feel her best.
She has also learned that emotional stress can be a powerful trigger for lupus flares — a reminder of how closely the disease is tied to both body and mind.
“I try not to get upset,” she said, noting that one of the first signs of an oncoming flare for her is irritability. “When I get like that, I can stay in my bed asleep for two or three days. Then, I’m weak.”
Terri
It is not uncommon for lupus to be diagnosed after previous diagnoses for other autoimmune diseases. Terri, a Dallas-based accountant, has experienced this firsthand.
Terri’s lupus journey began with a winding path that spanned decades and multiple autoimmune diagnoses.
“I was diagnosed with Sjogren’s syndrome (SS — cousin to lupus) initially in 2005. I was going to the doctor due to chronic migraines. I was sent to several specialists including a neurologist and oncologist (because my labs were wonky) — I happened to go to my primary care physician on a day she was out of the office and I had to see her nurse practitioner. As luck would have it, this NP used to work in a rheumatologist’s office in the past,” she said.
Terri said finding out that lupus was also part of the picture was both a shock and an unsettling moment of clarity. “It’s a hard question because I just found out [this year] that I actually have lupus and it was kind of a shock because, again, I was at an appointment where I had to see an NP instead of my doctor. She mentioned it casually because she thought I had already been told. I had kinda’ made the assumption due to the fact that I have Sjogren’s and I was diagnosed with mixed connective tissue disease (MCTD) in 2023.”
For Terri, managing lupus day to day has been shaped by a wellness journey she began long before her autoimmune symptoms became severe.
“Fortunately for me, I started on a wellness journey prior to having a full-blown display of symptoms. As I stated before, I lost my teeth back in 2012 or 2013 and I got dentures. At that time my other symptoms were very mild. In 1995-1997 I weighed about 380 pounds and I lost weight due to being a single mother wanting to be alive to raise my son,” she said.
Similar to Vanessa, Terri also discovered how stress impacts her lupus flares.
“Stress and eating off plan causes me to flare (i.e. inflammation). I eat 85% low carb/keto and it makes a MAJOR difference in how I feel. Also I am careful to get adequate rest (8-10 hours), reset when needed,” she said.
Leaving work early and using entire weekends at home, along with regular walks, is a major key to managing life’s stresses and staying healthy. Terri no longer allows outside expectations to dictate the way she manages her time.
“These habits are non-negotiable for me. I listen to my body — go when I can — cancel if necessary if I can’t. I don’t just push through because it will catch up with me,” she said.
Misconceptions and Advocacy
For both of these women, the lack of knowledge and misconceptions about lupus are hurdles that they consistently encounter. Even with the growing societal knowledge of invisible illnesses, many people believe that lupus is a disease that’s easily visible.
“Just because I don’t look sick, doesn’t mean that I am not. I take 11-13 pills a day to combat to treat dry mouth, constant cough, mucus in my throat and lungs, immunosuppressant to help moderate my immune system but finding a balance to make sure it does not OVER suppress my immune system,” said Terri.
Indeed, living with lupus often involves navigating a complex web of barriers, from systemic challenges to personal struggles. Many individuals face delays in diagnosis due to the disease’s unpredictable and overlapping symptoms, which can mimic other conditions and lead to frustrating cycles of misdiagnosis. Accessing knowledgeable specialists like rheumatologists can also be difficult, particularly in areas with limited health care resources.
Vanessa was clear that not only should people become more educated about lupus, but that the African American community in particular should familiarize itself with a disease that disproportionately affects the community.
Silver Linings
Health challenges notwithstanding, Vanessa and Terri have both found positive aspects of their diagnoses. Besides finding community online in social media groups, these two women have also drawn from their own strength and are poised to fight for their health and well-being.
“The positive lesson from me dealing with lupus is to stay upbeat. I’ve seen people who are really frail or sick. I think I have it pretty well off,” said Vanessa.
Terri intends to remain resolute in that she is not a victim of lupus.
“I may have been predisposed to get autoimmune disease due to my family history but I do not have to suffer with it. I can live a good life with it.”
