To my ‘forever nurse,’ who finally gave me my diagnosis of lupus

Where were you when you were told you had lupus? Who gave you the official diagnosis?

Confirming lupus is a challenge, not only because it seems to be a mystery to primary care physicians and specialists, but also because of the testing structure, insurance requirements, and even access limitations. The unpredictable flaring of symptoms and blood tests that return “normal” only complicate the diagnosis process.

I waited four years for a diagnosis — after years of symptoms, and after being confronted by a specialist who surmised what was going on with me. It was exhausting — like carrying around an open book that everyone refuses to read.

But then, a nurse practitioner (NP) changed everything.

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Beyond the obvious signs that I was in severe pain and my body had locked up, this nurse listened to how I’d been suffering and acknowledged what the specialist had said years before. She saw the patterns in my symptoms, ordered a new round of tests, and introduced new medications. When the results came in, it was this nurse who gave me the diagnosis. That moment of recognition transformed my care.

Advanced-practice registered nurses (APRNs), a group of skilled nurses that includes NPs and clinical nurse specialists, do this for countless patients every day. They provide patient-centered care that emphasizes careful listening. They notice subtle patterns in symptoms. They explain complex conditions in ways we can understand. In many communities, especially rural or underserved areas, they are often the primary providers that patients see regularly.

Rural NPs are more likely than urban NPs to serve as primary-care clinicians, and their presence in primary care practices has grown significantly over time. Many work in designated shortage areas, helping to ensure that communities without access to physicians still receive high-quality care.

These nurses combine scientific training with empathy. They manage complex cases, explain care plans in plain language, and guide patients through the confusing maze of chronic illness. They notice when something doesn’t quite fit, catch patterns others might miss, and often become trusted partners in our care journeys.

NPs acquire these skills through graduate-level programs where rigorous clinical training is paired with classroom instruction. According to the AANP 2024 Nurse Practitioner Practice Report, 84 percent of NPs hold master’s degrees, while a majority of psychiatric-mental health APRNs surveyed in 2022 held a master’s. Because these professional degree programs strengthen critical thinking and clinical reasoning, APRNs are able to notice subtle signs and patterns that can make a significant difference in lupus diagnosis and care. This is why the Lupus Foundation of America offers a free, on-demand continuing education course for nurses called Lupus Education for Nurses.

Regarding care, research suggests that nurse-led care improves outcomes, and hospitals with well-staffed nursing teams see fewer complications, shorter stays, and better overall patient health.

For people living with lupus and other chronic conditions, APRNs often become our allies. They translate medical complexity into actionable care and provide continuity in a world of uncertainty. They celebrate our small victories, guide us through the hard days, and remind us that we are seen. They become our doctors and our friends.

That is the case with my NP — my forever nurse. My experience with her was life-changing. And while statistics and studies are important, the most meaningful impact of nurses is what we feel in the exam room: compassion, attention, and expertise, all combined in someone who truly cares.

We acknowledge and celebrate people like my forever nurse — who often are our medical detectives, our first diagnosis providers, and sometimes the reasons why years of uncertainty turn to moments of clarity and recognition with treatment plans and strategies that finally fit. Come celebrate with me.

Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to lupus.