Living With Lupus

These tips for navigating life with lupus may help you feel better and more productive.

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Living with lupus, a disease that can affect nearly every organ in the body, has its ups and downs. Whether it's managing symptom flares or coping with the emotional aspects of having a chronic condition, it's important to understand the various ways that lupus can affect your life—and how to stay on top of it.¹

Here's what to know about living with lupus, including tips for managing the condition.

Living With Lupus

Bathing, housework, shopping, working, and caring for children can feel overwhelming when you have lupus (or systemic lupus erythematosus), especially during a lupus flare.

Lupus causes joint and muscle pain that can prevent or decrease the ability to perform routine chores and hobbies. Joint stiffness affects about 90% of people with lupus.²

Fatigue can be a debilitating side effect of lupus, affecting 50%-90% of people with the condition.³ It's not the type of fatigue that is cured with a nap; it's often constant and affects quality of life for many people.

Despite these and other challenges, there are things you can do to manage your life and your health when you have lupus:

Manage Medications and Physician Visits

Lupus remains a serious condition. Despite improvements in survival over the years, people with lupus have about a three-fold increase in death from all causes compared with the general population.⁴

Following your healthcare provider's treatment regimen is essential for controlling and minimizing the side effects of lupus. The Lupus Foundation offers a hopeful outlook based on improved diagnosis and treatment. It says most people with lupus can expect to live a near-average life expectancy if they take their medications as prescribed and seek follow-up care when side effects or new lupus symptoms arise.⁵

Depending on your symptoms, you may be taking multiple medicines—and making frequent doctor visits. Here are a few tips to keep you organized:⁶, ⁷

  • Fill a pill box each week to keep track of your doses
  • Keep your appointments for routine lab work and doctor visits
  • Report any symptoms or side effects you are experiencing to your provider
  • Bring an extra person to your healthcare visits to take notes and be an extra pair of ears

Remain Physically Active

Although people with lupus often exercise with less intensity and frequency, staying active improves mood, cardiovascular health, and bone strength, and reduces fatigue.², ⁸ Exercise can also improve range of motion, reduce stiffness, and ease joint inflammation.⁹

Ask your healthcare provider whether some type of rehabilitation service (such as physical therapy) may be helpful. Since lupus affects each person differently, a physical therapist can design a program unique to your needs.

Mind Your Mental, Emotional, and Social Health

Lupus symptoms are not only physically draining but have extensive mental and emotional consequences. Studies show that 25% of people with lupus have major depression, and 37% have anxiety.¹⁰ That's why lupus treatment should also include ways to improve psychological outcomes.

Body image is an important issue for those with lupus. Hair loss, skin changes, and weight gain (due to steroid use and renal disease) are concerns that many people with this condition face. In addition, poor body image can interfere with one's social life, which may lead to worsening depression and mood disorders.³

Living with lupus can also strain relationships with loved ones and friends. When you cancel plans or won't commit to social outings, they might think you're just not interested. In truth, you're exhausted. Likewise, difficulty performing chores or duties at home can lead to resentment and more responsibility for your partner. Many people with lupus fear becoming a burden to others or worry they won't be accepted.³

It's vital for the person with lupus and their family and friends to have additional support and help after diagnosis.

Take Care of Yourself

It may seem counterintuitive to practice self-care if you already feel that your condition is an inconvenience to others. But acts of self-care can improve lupus symptoms.

In addition to taking your meds, seeing your doctor, and making exercise part of your regular routine, these tips may help you feel better and be more productive while living with lupus: ⁸, ¹¹

  • Understand and minimize lupus flares
  • Protect yourself from the sun (which can trigger symptoms)
  • Get enough sleep at night
  • Reduce your stress
  • Eat healthy and stay hydrated
  • Focus on what your body is doing well
  • Find things to appreciate each day
  • Build a support system to help you manage the challenges of lupus

Although lupus will always be part of your life, you can still feel good and experience well-being.

Summary

The physical symptoms of lupus can make it challenging to perform activities of daily living. At the same time, issues such as body image can lead to low self-esteem, loneliness, and depression. Fortunately, taking your medications as prescribed and on schedule can help reduce the side effects of lupus. In addition, exercise can improve the fatigue and joint pain that often occur with this condition.

Ensuring that your treatment plan includes ways to support your mental and emotional health is essential to living with lupus. Also, prioritizing self-care can increase your ability to perform your daily responsibilities more effectively. Although living with lupus is demanding at times, you can still have a long and healthy life with this condition.

Sources:

  1. Food and Drug Administration. Lupus.
  2. Fava A, Petri M. Systemic lupus erythematosus: Diagnosis and clinical management. J Autoimmun. 2019;96:1-13. doi:10.1016/j.jaut.2018.11.001
  3. Olesińska M, Saletra A. Quality of life in systemic lupus erythematosus and its measurement. Reumatologia. 2018;56(1):45-54. doi:10.5114/reum.2018.74750
  4. Lee YH, Choi SJ, Ji JD, Song GG. Overall and cause-specific mortality in systemic lupus erythematosus: an updated meta-analysis. Lupus. 2016;25(7):727-734. doi:10.1177/0961203315627202
  5. Lupus Foundation of America. Prognosis and Life Expectancy.
  6. Lupus Foundation of America. Getting the most from your lupus medications.
  7. Lupus Foundation of America. Dos and don'ts for living well with lupus.
  8. American College of Rheumatology. Lupus.
  9. Lupus Foundation of America. Five benefits of exercise for managing lupus.
  10. Lupus Research Alliance. 5 Facts About Lupus and Mental Health.
  11. Office on Women's Health. Living With Lupus.
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