It was at the young age of 12 that Heather started to experience a variety of seemingly unrelated health issues. First joint pain, particularly in her knees, ankles and elbows. Then came the rashes on her face and back, the hair loss, the fatigue, the sensitivity to light and the difficulty breathing. These symptoms baffled her medical team and lead them to refer to her as a “mystery person.” Her symptoms were difficult and draining to manage while she spent her young adolescent years living with this mystery.
It would take many years, ER visits, missed family moments, and the birth of her son before Heather finally learned exactly what was causing her mysterious symptoms. Unbeknownst to Heather and her family, her symptoms were interconnected and all stemmed from one major autoimmune disorder: lupus.
“I vividly remember the day I was diagnosed,” Heather tells AfroTech. “I was in bed [at home], struggling to breathe and [I] had a red, inflamed rash on my face. Being a single mother to my 3-year-old son was tough, and I was scared [about the unknown cause of my symptoms]. The ER doctor who diagnosed me said that I was the textbook case of lupus, even before running any tests.”
Despite being described “a textbook case of lupus,” Heather’s diagnosis of systemic lupus erythematosus (SLE), the most common form of lupus, took much longer than it should. Research from the Lupus Foundation of America (LFA) found that on average, it takes six years for people with lupus to be diagnosed after the first time they notice symptoms. Due to the complex nature of lupus, delays in diagnosis allow the disease to progress further, worsening symptoms and putting lupus patients’ health at risk of organ damage or bone tissue degradation. SLE disproportionately affects Black women and this group experiences a more rapid progression of symptoms and worse outcomes compared to other groups. By all measures, she should have been diagnosed earlier.
Heather’s doctor offered an encouraging word at her diagnosis, one in which she leans on to this day: “The doctor told me to consider yourself a ‘Super Woman’… and boy was he right,” said Heather.
Heather embraced her diagnosis as a lupus patient with a sense of relief, pride and renewed strength to keep fighting. After all, it had already been over a decade since she’d been fighting this chronic condition with no understanding of what she was up against, something that many lupus patients continue to deal with to this day.
Lupus impacts all patients differently due to the complexities of the disease, aiding to not only the difficulty of diagnosis but treatment as well. Discovering what course of treatment would be best for her was daunting: lupus patients often find that some remedies that address their symptoms come with debilitating side effects.
“One of my older cousins, who was a huge supporter of mine, also had lupus,” she explains. “She was the shining light of support for me following my diagnosis. Sadly, she passed away a few years ago from lupus but I am proud to carry on her memory and serve as a light of support for others with lupus, just as she did for me.”
The support of friends and family has been present throughout Heather’s lupus journey. Such continued support is what inspired Heather to pay it forward to other women experiencing lupus where she serves as a resource and support system.
“I find value in involving loved ones in my medical appointments. By being open about my bad days and acknowledging that I don’t feel good, I believe we can create a bigger impact and foster greater understanding of this invisible illness.”
And those around her have shown up and shown out. They’ve done everything from flying into town to be with her during vital appointments and procedures to running a bath when they see a flare-up occurring; and to someone battling lupus, the small gestures are just as important as those that are grand.
Heather’s son, who is now 19 years old, has been especially supportive and understanding as he has accompanied Heather on many of her doctor’s visits, and has seen first-hand the effects of her symptoms. He has been by her side since the outset of her journey, consistently crafting activities for them to enjoy together, such as reading, mindful of not overtaxing his mother and exacerbating her symptoms.
“In a sense, my son has been ‘living’ with lupus the majority of his life, we see this as our own lupus journey together,” she said.
Heather has also learned to lean on her own strength.
“With a complex disease like lupus, you must be strong,” she says. “I must empower myself and be my primary support system. I braved numerous ER visits and hospital stays. My worst days taught me the importance of mental fortitude. Drawing from my inner strength kept me going.”
That inner strength has been bolstered by her ability to share the information she’s learned with others. Her diagnosis has helped her find lupus communities and, in turn, help them grow and develop their networks and resources. Spreading the word was Heather’s first course of action once she found the treatment plan that worked best for her.
“Today, I am committed to being a ray of light for others facing similar challenges,” Heather says proudly. “With my voice and advocacy, I hope to inspire other lupus warriors. By sharing our lupus experiences, we can learn from one another and inspire those within the lupus community.
“As this community becomes more connected and vocal, we can rally others, from families, doctors and even policymakers, to better understand ways to support us and identify gaps in lupus care,” she says.
And just like that, a young woman who was unsure of her future who just wanted to feel better has not only become Super Woman in her own life and that of her son’s, but in the lives of all the lupus warriors she can reach directly and through lasting change in how we treat and discuss lupus.
This article is sponsored by AstraZeneca. To learn more about living with lupus click here.
