Imagine waking up one day with joint stiffness, debilitating pain, and overwhelming fatigue that make even the simplest of tasks seem impossible. Now, envision dealing with confusion and depression as well, all while those around you struggle to grasp the magnitude of your daily battles. This is the reality of living with systemic lupus, a complex autoimmune disease that can significantly impact your life.
Living with lupus can be a challenge, but the good news is that, with the proper healthcare guidance, you can still live a full life through effective management.
Lupus is a rheumatic condition, which means that it is an autoimmune disease. In autoimmune disorders, the body’s immune system mistakenly attacks healthy tissues, perceiving them as foreign invaders. This can cause painful inflammation, and the ongoing battle within the body can result in various symptoms ranging from manageable to life-threatening. The unpredictability of lupus is one of its defining characteristics, as symptoms can appear, disappear, and change over time.
Because lupus is an autoimmune disorder, it is not contagious. Although it can damage vital organs if not managed, it is not considered terminal; people with lupus usually have a normal life expectancy. However, it is a chronic disease for which no cure has been discovered.
One of the characteristics of lupus that makes it difficult to diagnose and treat is that it affects each person differently. As with many chronic conditions, individuals who have lupus can have “good days and bad days,” and the bad days can seriously affect their ability to get through the day and carry out everyday activities. These ups and downs of living with lupus mean that those with the condition – as well as others who live with the lupus patient – often need to make adjustments in their lives to cope with these changing conditions.
Support and Communication
If you have lupus, communication is critical when it comes to helping the people around you understand lupus and working with them to make sure you can carry on with your life’s activities.
Lupus can severely impact your ability to carry out certain types of jobs. Lupus is considered a disability, so employers will seek ways to accommodate the condition. Some things that may help are more flexible schedules, additional breaks, having an ergonomic workstation, adjusting your responsibilities, and telecommuting when necessary. In some cases, you may have to adjust your job responsibilities, reduce your workload or work hours, or train for a different career.
If you are a student, you will similarly have to make adjustments. Many schools will work with you to accommodate your needs without jeopardizing your ability to complete your education. These adjustments may include taking a lighter course load, needing additional time for tests or coursework, and flexibility on in-person attendance to your classes.
At home, it is essential to communicate with your family members or roommates what your limitations are and when you feel unwell. You may need help with household tasks and sufficient time for rest when symptoms are acute. Try to establish and maintain a support system that can step in whenever you need assistance and always ask for help when you need it.
Diagnosis and Treatment
Diagnosing and treating lupus can be challenging because it varies significantly from person to person and often shares symptoms with other medical conditions. There isn’t a single test that can definitively diagnose lupus. Instead, doctors rely on a combination of blood and urine tests, clinical signs, and physical examinations before making a lupus diagnosis.
If lupus affects your heart or lung function, your doctor may also recommend imaging tests like a chest X-ray or echocardiogram. In some cases, a biopsy, where a small tissue sample is taken, might be necessary to determine the best treatment if your kidneys have been damaged or to confirm a diagnosis if lupus affects the skin.
Once diagnosed, lupus treatment depends on the symptoms and their severity. Medications used to manage lupus include nonsteroidal anti-inflammatory drugs (NSAIDs) for pain and swelling, antimalarial drugs like hydroxychloroquine to reduce the risk of flare-ups, corticosteroids to counter inflammation (especially in serious cases), immunosuppressants for severe lupus, and biologics such as belimumab for symptom relief.
Because it is a chronic condition, it’s essential to work closely with your doctor to determine the most appropriate ongoing treatment plan. Unfortunately, this may require trying different therapies to determine what works best for you. Medications may need to be adjusted as your symptoms change, and it’s essential to weigh the benefits and potential risks of each treatment option. In some cases, new drugs are being studied, so ongoing research may lead to more effective treatments as your condition progresses.
At Beacon Clinic, Dr. Dustin Dinning specializes in rheumatology, including treating people with lupus. Beacon Clinic is a regional leader in helping patients develop comprehensive treatment plans and lifestyle support for ongoing medical conditions, including rheumatic diseases and cancer. If you have been diagnosed with lupus, contact Beacon Clinic today to schedule an appointment.