When people initially experience lupus symptoms, many do not seek help because the symptoms are subtle at first. Over time, it gets progressively worse and can be confusing as it mimics other conditions such as rheumatoid arthritis, fibromyalgia, skin infections, kidney disease, and others, leading doctors to first rule out most common diseases. This lack of knowledge needs to be addressed to facilitate the first step in finding a diagnosis of lupus.
Even though I have had lupus since 2010 and have experienced the changes it has brought to my life, I still struggle to explain the profound impact it has had on my life since diagnosis.
Lupus is a chronic inflammatory disease that affects more than five million people worldwide and primarily affects women.
It is an autoimmune disease in which the body’s immune system attacks healthy cells and organs, including the kidneys, lungs, heart, brain, skin, joints, and blood cells. Most people with lupus are diagnosed between the ages of 15 and 44.
Navigating lupus care broadly involves three processes, namely recognizing symptoms, seeking a diagnosis, and accessing health care services to maintain quality of life.
Recognizing its symptoms can be confusing in itself. It takes an average of six to seven years for people to be diagnosed with lupus. Although any symptom of illness can signal the disease, some may be closely associated with lupus, such as a butterfly-shaped rash on the face, unexplained fever, joint pain, swelling in the hands and feet, loss of hair or alopecia, skin changes, sun sensitivity. and Raynaud’s disease (fingers that turn red and blue when cold). In Nepal, majority of people lack awareness and knowledge about lupus.
Although an abundance of information and research on lupus is available online from different organizations, information about the disease in Nepal and especially in several Nepali languages is almost nil. Access to information about lupus that goes beyond symptoms and includes information about rheumatologists, counseling, medical services and local resources could help raise awareness and encourage people to seek a diagnosis.
Diagnosing lupus can be difficult, especially if the person has other health conditions. Given the considerable heterogeneity between individuals as well as within an individual over time, many aspects of lupus may be uncertain, and significant unmet medical needs may arise.
Some of these include rapid diagnosis, accurate monitoring of disease activity, prediction of flares and remissions, and tailoring of treatment according to patient needs.
Diagnosing lupus is like putting together a puzzle where the doctor will look at several factors such as symptoms, medical history, family history, and lab results. Multiple misdiagnoses can occur at the time of diagnosis with early symptoms often misattributed to causes of mental health, psychological, or medically unexplained symptoms.
The experience of receiving a diagnosis can be overwhelming and emotionally draining at first. Multiple visits to the doctor’s office, multiple tests, painful symptoms, and extreme exhaustion can be difficult.
Interactions with physicians/rheumatologists during the diagnostic journey are critical in laying the foundation for the psychological well-being, cognition, and care-seeking behavior of a patient with lupus.
Many lupus patients have documented that their experiences with healthcare professionals are delegitimized and that their diagnostic journey has been a harrowing and daunting experience. Lack of knowledge about lupus among doctors and nurses has often been reported, leading to distrust of doctors.
Proper care and attention from rheumatologists and physicians can lead to reduced frequency of flare-ups, less pain, reduced disability, and improved physical and mental functional status. The chronicity of the disease and the disability resulting from the diagnosis raises a fundamental question: what to do? After receiving a diagnosis, access to necessary health care services is crucial.
Lupus Nepal provides such services to patients all over Nepal. But because lupus is poorly understood, the physical, emotional and socio-economic burden remains significant for people who have it.
Lupus Nepal Support Group provides support to people living with the disease and their families through free online telemedicine services, where patients can consult with certified medical personnel and receive additional health-related information and resources. It also provides free counseling services, offering one-on-one support for people with lupus and their families.
The financial burden associated with long-term medications, doctor visits, hospitalization, and medication side effects is a major barrier for most patients.
Thus, national organizations and stakeholders should support lupus awareness initiatives and increase knowledge about the importance of early detection and treatment. Improving the self-management skills of people with lupus and improving the ability of healthcare professionals to diagnose the disease is equally important through the availability of information in different ethnic languages and the advertising of available services.
Unexpected flare-ups and certain triggers can increase feelings of frustration, anxiety, fear, anger, and sadness, which ultimately impact a person’s quality of life. However, people with lupus can take proactive steps to put their health first. It is important to learn healthy coping skills and practice strategies that will help navigate the physical, mental, and emotional manifestations of lupus.
Creating a plan of action that includes exercise, getting enough rest, healthy eating, meditation, self-care activities, and sun avoidance can help in the long run.
Finding a support group, signing up for therapy, and counseling can improve the overall well-being of people with lupus.
A version of this article appears in the April 8, 2022 printing of The Himalayan Times.