Lupus & Rheumatoid Arthritis: One Woman’s Journey to Diagnosis & Treatment

The journey of living with a chronic illness is rarely simple and it’s often complicated by the presence of multiple conditions. For Shontia Matlock, that complexity arrived with a lupus diagnosis at age 19, while she was pregnant. But lupus wasn’t her only challenge; she would later be diagnosed with rheumatoid arthritis, requiring her to navigate the intricacies of managing two autoimmune diseases simultaneously. Matlock’s story, shared recently, highlights the emotional and physical hurdles of such dual diagnoses, and the importance of self-advocacy in a healthcare system that can sometimes miss the mark.

A Family History and a Misdiagnosis

Autoimmune diseases, where the body’s immune system mistakenly attacks its own tissues, often have a genetic component. Matlock’s experience was no different. “Everybody in my family has it: my mom, grandmother, uncles, cousins,” she says, acknowledging a familial predisposition to lupus. Despite this awareness, receiving the diagnosis at such a young age, and while pregnant, was a shock. The initial encounter with healthcare providers was particularly jarring. Matlock recounts being mistakenly told she had AIDS before further testing revealed the correct diagnosis of systemic lupus erythematosus (SLE). This misdiagnosis underscores the challenges in diagnosing lupus, as SLE can mimic a variety of other illnesses, requiring careful and persistent investigation.

Lupus manifests in various ways, and Matlock experienced common symptoms like a facial flush and the characteristic “butterfly” rash – a red pattern across the cheeks, and nose. While familiar with the disease through her family, she initially struggled to accept her own diagnosis, a common reaction when facing a chronic illness. This initial denial, she admits, led to a period of not prioritizing her health.

The Weight of Dual Diagnoses

Matlock’s symptoms worsened, leading to frequent vomiting, swelling, and debilitating joint pain. Eventually, she received a second diagnosis: rheumatoid arthritis, another autoimmune condition characterized by inflammation and joint pain, stiffness, and limited flexibility. The combined impact was significant. She described experiencing severe fluid retention around her joints, leading to blisters on her skin. Initially, she resisted following medical advice, a decision she later regretted. This period of non-compliance led to a dramatic decline in her health, bringing her to a point where she felt her life was at risk.

A turning point came with a stern but vital message from her mother: “You have a child to live for. You cannot keep doing this.” This prompted Matlock to re-evaluate her approach and actively participate in her own care. She began participating in clinical trials for both lupus and rheumatoid arthritis, a step that ultimately helped her regain control of her health.

Navigating Treatment and Unexpected Complications

The path to effective treatment wasn’t straightforward. Matlock experienced drug-induced lupus as a side effect of some treatments, leading to additional conditions like Raynaud’s syndrome (affecting blood flow to the fingers) and Sjögren’s syndrome (causing dryness, fatigue, and pain). She similarly developed discoid lupus, a skin condition, alopecia (hair loss), and vitiligo (loss of skin pigment). The hair loss, in particular, was emotionally challenging.

Finding the right medication regimen for rheumatoid arthritis proved difficult, with several treatments proving ineffective. Eventually, a combination of medications provided relief. Simultaneously, she enrolled in a trial for anifrolumab (Saphnelo), a lupus treatment, and experienced significant improvement. However, the treatment wasn’t yet approved by the U.S. Food and Drug Administration (FDA), and her symptoms returned when the trial infusions were paused. Following FDA approval in July 2021, she was able to resume treatment, experiencing a renewed sense of well-being and the ability to return to work.

Managing the complex medication schedule for both conditions remains a challenge, but Matlock has implemented a system of reminders to ensure adherence.

A Shift in Perspective and Ongoing Vigilance

Today, at 39, Matlock works as a preschool teacher in Stone Mountain, Georgia, and her outlook has transformed. She emphasizes the importance of asking questions and advocating for herself – skills she lacked earlier in her journey. She now proactively inquires about potential drug interactions and the impact of novel treatments on her other health conditions. While monthly infusions provide relief, she still experiences daily pain and acknowledges the constant need to balance self-care with the demands of life.

Lifestyle adjustments are also crucial. Matlock must avoid excessive sun and bright artificial lights to prevent lupus flares, and cold weather can exacerbate her rheumatoid arthritis symptoms. She acknowledges the need for flexibility, sometimes prioritizing rest and self-care, while other times pushing through to maintain a sense of normalcy.

Emotional Resilience and the Power of Support

The emotional toll of living with chronic illness is significant. Matlock admits to moments of sadness and frustration, grieving the limitations imposed by her conditions. However, she draws strength from her mother, who has navigated her own health challenges with resilience, including surgeries for systemic lupus erythematosus and sickle cell anemia. Her mother’s example – consistently attending appointments and adhering to her treatment plan – serves as a powerful motivator. “If I want to see my baby have babies, I have to make sure I’m here,” Matlock says, echoing her mother’s unwavering commitment to health.

Empowerment Through Education and Advocacy

Matlock offers advice to others living with rheumatoid arthritis: prioritize rest and self-care when experiencing flares. For those with lupus, she stresses the importance of education, connecting with local support groups, and actively advocating for the best possible care. “Don’t be afraid to ask questions and build your confidence to advocate for yourself, because nobody is going to love you more than you love yourself,” she emphasizes. She underscores the need for self-prioritization, recognizing that one cannot effectively care for others without first caring for oneself.

Living with lupus and rheumatoid arthritis requires ongoing adaptation and a commitment to self-management. Matlock’s story is a testament to the power of resilience, the importance of strong support systems, and the vital role of self-advocacy in navigating the complexities of chronic illness. For more information about lupus, the Lupus Foundation of America provides valuable resources and support.