Version July 2025
INTRODUCTION —
This topic was written by an individual patient diagnosed with systemic lupus erythematosus (SLE). It is intended to offer clinicians insight into the experience of a single individual from that individual's point of view, which enhance clinical practice and health care delivery. This description of a particular patient's experience is not intended to be comprehensive or to provide recommendations regarding diagnosis, treatment, and/or medication information. It is not intended to be medical advice or to be a substitute for the medical advice, diagnosis, or treatment of a health care provider based on the health care provider's examination and assessment of a patient's specific and unique circumstances.
For related clinical topics, please see:
●(See "Systemic lupus erythematosus in adults: Clinical manifestations and diagnosis".)
●(See "Systemic lupus erythematosus in adults: Overview of the management and prognosis".)
UpToDate also offers patient education materials. "The Basics" topics are short overviews written in plain language, at the 5th to 6th grade reading level, that answer the main questions a patient is likely to have about their condition. "Beyond the Basics" topics are written at the 10th to 12th grade reading level and are intended for readers who are seeking more detail and are comfortable with some medical terminology. You can share this content directly with your patients:
●(See "Patient education: Lupus (The Basics)".)
●(See "Patient education: Lupus and kidney disease (The Basics)".)
●(See "Patient education: Lupus and pregnancy (The Basics)".)
●(See "Patient education: Systemic lupus erythematosus (Beyond the Basics)".)
●(See "Patient education: Systemic lupus erythematosus and pregnancy (Beyond the Basics)".)
OVERVIEW OF MY JOURNEY WITH SLE —
As a spirited and optimistic 27-year-old mother with two young children, I never imagined that the slight discomfort and tingling sensations in my fingers were the initial signs of an enduring, life-threatening rollercoaster ride. My journey with systemic lupus erythematosus (SLE; lupus) is defined by pain, fear, and uncertainty, as well as resilience, courage, growth, and purpose. When I was diagnosed with SLE, I made a pivotal choice to become a patient advocate and a voice for those facing similar health battles.
STAGES OF DIAGNOSIS AND TREATMENT —
My diagnostic journey with systemic lupus erythematosus (SLE) unfolded over the course of 12 years. This period of my life was very frustrating. Although my health was faltering, most of the health care providers I met treated my symptoms without giving me any information about the underlying cause. After many years, I was finally diagnosed with SLE.
Early symptoms and medical evaluation — My first symptoms of SLE surfaced following the birth of my youngest son, when I noticed tingling, numbness, and intermittent pain in my fingers. I attributed these symptoms to a minor postpartum issue and did not seek medical attention.
Three years later, I began to experience severe chest pain, fever, and difficulty breathing. This time, I consulted a medical professional who diagnosed me with pericarditis. The provider explained that inflammation of the chest wall was causing my symptoms; however, they did not explain why the inflammation was there. I was hospitalized for approximately five days and treated with glucocorticoids and pain medications. Since there was no mention of SLE as the cause of pericarditis, I returned home to resume my life as normal.
Worsening symptoms and a lack of answers — Another four years passed before I experienced many nonspecific symptoms, including extreme fatigue, fevers, night sweats, unexplained weight loss, headaches, digestive problems, joint pain, and a recurring, piercing pain in my side. I sought medical attention with a few primary care physicians and received symptomatic treatment. However, they did not investigate the underlying cause of my symptoms; I do not recall having any blood work or imaging tests done. The lack of a clear diagnosis led to fluctuations in my health status.
After two more years, I was finally referred to a rheumatologist. I was hopeful that the appointment would provide answers and be a long-awaited step forward. Unfortunately, overall, I was disappointed. The rheumatologist only obtained basic laboratory testing because at the time I did not have adequate insurance coverage. The one positive outcome of the consultation was that the rheumatologist diagnosed the unbearable pain in my side as pleurisy and prescribed another course of glucocorticoids. They also diagnosed me with psoriasis and a stomach ulcer. For the first time, we discussed the suspicion of an underlying autoimmune disease, such as mixed connective tissue disease. However, a definite diagnosis remained elusive given the inability to obtain more extensive diagnostic testing, and my treatment therefore remained focused on individual symptoms rather than a unifying diagnosis.
The next six years were very difficult. I managed my health with nonsteroidal anti-inflammatory drugs (NSAIDs) and other over-the-counter remedies because I had very limited access to health care. My health declined to the point that I had to quit my job. I spent most of my days in bed. It was very difficult and I was not much of a wife or mother. I was basically fighting to stay alive.
A long-awaited diagnosis — After an additional six years of inadequate care, the disease progressed aggressively. I was hospitalized with new symptoms. Finally, I had reached a turning point in my diagnostic journey. I met my fourth set of health care providers, who were determined to get answers and eventually diagnosed me with SLE. The extended period of living without a clear diagnosis was over.
THE PATH TO COMPREHENSIVE CARE —
Living with systemic lupus erythematosus (SLE) feels like navigating an ever-changing and unpredictable obstacle course. The labyrinth of my symptoms posed a diagnostic challenge and continues to make it difficult for both me and my health providers to understand and effectively manage the condition.
Recording symptoms — Since SLE can cause a wide range of disease manifestations, I developed a system to track and document my symptoms. This practice helped me communicate more effectively with my health care providers and fueled my hope for more cohesive care.
Over time, SLE affected multiple organ systems and caused a wide range of symptoms for me, including the following:
●Mucocutaneous manifestations – Hair loss, mouth sores, and various rashes including scaly patches
●Musculoskeletal manifestations – Myalgia, arthritis, and a frozen shoulder
●Neurologic manifestations – Loss of balance, memory issues, headaches, dizziness, neuropathic pain, and numbness in my fingers and toes
●Cardiopulmonary manifestations – Chest pain and shortness of breath
●Gastrointestinal manifestations – Heartburn, nausea, and stomach pain
●Constitutional manifestations – Fever, fatigue, night sweats, and lymphadenopathy
Navigating the medical system — Over time, I underwent an array of investigative testing, including blood tests (eg, for specific autoantibodies), a skin biopsy, and imaging (eg, radiographs, echocardiogram, cardiac stress test, electromyography). While I found the testing intrusive and exhausting, I held out hope that the next test would provide answers.
I received multiple diagnoses, including SLE, mixed connective tissue disease, antiphospholipid syndrome, Raynaud phenomenon, hypertension, pulmonary hypertension, inflammatory arthritis complicated by swan neck finger deformities, and patellar tendon ruptures.
To treat these various manifestations and complications of SLE, I worked with a comprehensive health care team that included primary care, rheumatology, cardiology, pulmonology, dermatology, orthopedics, and neurology.
Processing the diagnosis — When I finally received a diagnosis of SLE, I was skeptical. Questions swirled in my mind: "Can a single disease truly manifest an endless array of unrelated symptoms?" and "Is it possible for one person to endure these overlapping conditions and still survive?" The answer to the first question had already revealed itself as a resounding "yes." However, the second question continued to bother me and prompted a determined quest for affirmation.
My patient-provider relationship — The patient-provider relationship plays a crucial role in managing a complex disease like SLE. Finding the right provider is fundamental to establishing a strong bond. An ideal provider is knowledgeable about SLE, demonstrates a willingness to learn, listens actively, and shows empathy.
My health care model — For more than a decade, my current rheumatologist has overseen my care and served as the central coordinator. Our partnership is built on empathy, trust, and open communication. I have trusted her to assemble and lead my health care team of specialist providers – a collaborative group working seamlessly to improve my health outcomes.
My provider and I have embraced a patient-centered precision care model, wherein we collaborate closely to make decisions about my health care. While she contributes expert knowledge and empathy, I provide my perspective based on my lived experience as a patient. Here is how our partnership works:
●Comprehensive discussions – We discuss the details of my symptoms, explore the risks and benefits of diagnostic procedures, review test results, and fine tune my treatment plan when needed.
●Insurance navigation – My provider actively assists in dealing with the complexities of health insurance, ensuring approvals for necessary procedures and medications.
●Communication – Maintaining direct access to my health care providers has been critical to support bidirectional communication. This facilitates timely communication to address any concerns that arise.
●Empathy – Despite time constraints during consultations, my provider consistently takes a moment to inquire about my well-being and family.
HOW SLE HAS AFFECTED MY LIFE —
The experience of living with systemic lupus erythematosus (SLE), while wholly negative, has yielded unexpected positive outcomes.
Personal growth and an emphasis on self-care — Despite the challenges I experienced with SLE, I did not let it completely extinguish my aspirations. Instead, I consciously prioritized wellness over helplessness. Taking control of my health required a focus on self-care and a deep understanding of the physical and mental aspects of my condition. By paying close attention to my body’s responses to daily stressors, medications, and other factors, I became more attuned to my own needs. Simple actions, such as learning to say "no" to things that could worsen my health, made a meaningful difference. In addition, I proactively engaged in decisions related to my treatment plan, ultimately making adherence easier.
Impact on family — As a young family, we experienced many of the challenges of living with a chronic disease. It is an arduous journey. The most difficult thing for us as a family was coming to terms with the fact that our lives had changed. We had to reimagine everything from how to cope with what used to be the simple activities of everyday living to the change in our financial status as we became a single-income family. Our instinct as parents was to protect our children by providing them with a good upbringing, ensuring their safety, and facilitating a solid education.
Despite the challenges we faced in maintaining our desired quality of family life, our faith gave us hope. Thankfully, our children developed into mature, well-mannered, educated, and empathetic adults. Inspired by this journey, I now support families affected by SLE that have school-age children through counseling, family-oriented events, and academic scholarships. I strongly advocate for viewing measures that address social determinants of health through the lens of family quality of life.
Adjustment to the "new normal" — My lifestyle changed significantly due to SLE. While I still see myself as a capable, optimistic, and goal-oriented person, I have had to adapt to a "new normal," which includes dealing with the following challenges:
●Physical disability – My biggest challenge is the physical disability resulting from the musculoskeletal sequelae of SLE, which is worsened by adverse effects of chronic glucocorticoid therapy. Adverse effects have included osteoporosis, bone fractures, and muscle pain and weakness, which have affected my mobility. This challenge involves not just the visible aspects, but also the loss of independence. Over time, I have come to accept the need for assistance.
●Social isolation – The isolation caused by extended periods of being too sick to socialize was difficult. I found solace in connecting with others who shared similar experiences. Building a new social network with people who understand my reality has been incredibly beneficial.
●Short-term memory loss and brain fog – As someone who once prided herself on having a keen memory, dealing with short-term memory loss and brain fog has been very painful. Now, I rely on writing things down to remember them, hoping I will remember where I wrote them.
Opportunities as a patient advocate — Although initially I did not anticipate being able to live a productive life with SLE, I am now deeply passionate about my work as a global patient advocate. My role allows me to serve as a bridge between various health care stakeholders. Here are some key aspects of my advocacy journey:
●Participation on advisory boards – I am a member of a hospital patient advisory board and a quality measurement review board. These platforms enable me to contribute valuable insights and advocate for patient-centric approaches.
●Work as an SLE ambassador – Within the SLE community, I proudly hold the position of a SLE ambassador, wherein I share my lived experiences as a patient and advocate for improvements in the health care system. As an example, I am a dedicated faculty member of the Patient Involved Medical Education group, in which I help shape the future of medicine by training aspiring health care providers at three medical schools. I also speak at medical and pharmaceutical events, emphasizing the human side of health care.
●Collaboration on research initiatives – I collaborate closely with rheumatologists on various SLE research projects and community engagement initiatives. These interactions have provided invaluable insights into patient-centered care and the vital role of community involvement.
●Community health outreach – Through my grassroots work as a lead advocate in a patient organization, I engage directly with and provide education to patients in their own environments and languages. By prioritizing patients' unique needs and preferences, we strive to shape inclusive and improved health care outcomes.
MESSAGE FOR OTHERS
Advice for peers — Taking charge of your health is essential. As a patient, I encourage peers to focus on these three priorities:
●Educate yourself – A well-informed patient tends to be healthier. Seek reliable resources and learn as much as you can about your health and well-being.
●Prioritize self-care – Pay close attention to factors beyond SLE that affect your well-being or trigger your flares, particularly ones that may not be captured by clinical tests (eg, life stressors, sleep habits, health of relationships, or quality of diet). Seek help when needed.
●Build support – Building a strong support system is very important. While it may take time, start taking intentional steps toward building a network.
●Treatment adherence – It is very important to adhere to your SLE therapy. Try to keep your appointments with your health care providers and always take your medication as prescribed.
Advice for health care providers — As William Osler eloquently put it, "The good physician treats the disease; the great physician treats the patient who has the disease" (William Osler, Canadian Physician, 1849-1919). I encourage all health care providers who work with patients who have SLE to get to know their patients as individuals and build a therapeutic partnership grounded in mutual respect, empathy, and trust. I believe the success of the patient-provider relationship hinges on building a genuine human connection. By taking the lead in this therapeutic partnership, providers can cultivate a welcoming and safe environment that encourages open and honest communication. This approach fosters collaboration grounded in trust, allowing both the provider and patient to share their insights and expertise. Ultimately, this partnership empowers patients, giving them a greater sense of control over their health care journey.
Just as SLE is a heterogeneous disease that affects individual patients differently, each patient can experience a variety of disease manifestations over time. My own journey with SLE is unique and will be different from others with this disease. Therefore, I hope that providers approach every patient encounter with humility and fresh eyes to rediscover both the patient and the disease, so they can work together to create a management plan that fully addresses the patient's current condition.
