Creating an action plan that includes exercise, adequate amount of rest, a healthy diet, meditation, self-care activities and avoiding the sun can be helpful in the long run
When people initially encounter symptoms of lupus, many do not seek help as the symptoms are subtle at first. With time, it gets progressively worse, and it can be confusing as it mimics other conditions such as rheumatoid arthritis, fibromyalgia, skin infections, kidney disease and others, leading physicians to rule out the most common diseases first. This lack of knowledge needs to be addressed to facilitate the first step in seeking a diagnosis for lupus.
Although I've had lupus since 2010, and I've experienced the changes brought forth by it in my life, I still struggle to explain the profound impact it has had on my life since the diagnosis.
Lupus is a chronic inflammatory disease that affects more than five million people worldwide and predominantly affects women.
It is an autoimmune condition where the body's immune system attacks healthy cells and organs, including the kidney, 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, that is, recognising the symptoms, seeking a diagnosis and accessing health care services to maintain quality of life.
Recognising its symptoms can be confusing in itself. It takes an average of six to seven years for people to get diagnosed with lupus. Although any symptom of illness can signal the disease, some can be closely associated with lupus such as butterfly-shaped rash on the face, unexplained fever, joint pain, swelling in the hands and feet, hair loss or alopecia, skin changes, sun sensitivity and Raynaud's disease (fingers that turn red and blue when cold). In Nepal, majority of the people lack awareness and knowledge about lupus.
Although an abundance of information and research about lupus is available online from different organisations, information about the disease in Nepal and especially in multiple Nepali languages is almost nil. Access to information about lupus, which goes beyond the symptoms and which 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 challenging, especially if the person has other health conditions. Given the considerable heterogeneity between individuals as well as within the same individual over time, several aspects of lupus can be uncertain, and substantial unmet medical needs can be created.
Some of these include timely diagnosis, accurate monitoring of disease activity, prediction of flares and remission, and tailoring treatment based on the patient's need.
Making a lupus diagnosis is like putting together a puzzle wherein the doctor will look at several factors like the symptoms, medical history, family history and lab results. Multiple misdiagnoses can be experienced at the time of diagnosis with early symptoms often misattributed to mental health, psychological or medically unexplained symptom causes.
The experience of receiving a diagnosis can be overwhelming and emotionally draining at first. The multiple visits to the doctors' office, multiple tests, painful symptoms and extreme exhaustion can be challenging.
Interactions with physicians/rheumatologists during the diagnostic journey are vital in laying the foundation for a lupus patient's psychological well-being, cognition and health care-seeking behaviour.
Many lupus patients have documented that their experiences with health care professionals are delegitimised and that their diagnostic journey has been distressing and a daunting experience. Lack of knowledge of lupus among physicians and nurses has frequently been reported, which has led to mistrust of physicians.
Proper care and attention from rheumatologists and physicians may result in reducing the occurrence of flares, less pain, reduced disability and better physical and mental functional status. The chronicity of the illness and the disability resulting from the diagnosis raises a fundamental question: What can be done? After receiving a diagnosis, access to necessary health care services is crucial.
Lupus Nepal provides such services for patients all over Nepal. But as lupus is poorly understood, the physical, emotional and socio-economic burden remains significant for people living with 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 certified medical personnel and receive additional health-related information and resources. It also provides free counseling services, providing one-toone support for people with lupus and their families.
The financial burden associated with long-term medication, doctors' visits, hospitalization and side effects of medication is a major hurdle for most patients.
Thus, national organisations and stakeholders need to support awareness-raising initiatives about lupus and increase knowledge about the importance of early detection and treatment. Enhancing the self-management skills of people with lupus and improving the health care professional's ability to diagnose the disease is equally important through the availability of information in different ethnic languages and advertisement of the available services.
Unexpected flares and certain triggers can heighten the feelings of frustration, anxiety, fear, anger and sadness, ultimately impacting a person's quality of life. However, people with lupus can take proactive steps to prioritise their health. It is important to learn healthy coping skills and practise strategies that will help navigate the physical, mental and emotional manifestations of lupus.
Creating an action plan that includes exercise, adequate amount of rest, a healthy diet, meditation, self-care activities and avoiding the sun can be helpful in the long run.
Finding a support group, signing up for therapy and counseling support can enhance the overall well-being of people with lupus.
A version of this article appears in the print on April 8, 2022, of The Himalayan Times.