Living with Lupus-Navigating Challenges and Embracing the Journey

by admin-blog-kh | December 8, 2025 7:11 am

Summary

Lupus is an auto-immune disorder that causes painful symptoms. These symptoms can cause challenges in the patient’s professional, personal and social lives. There is no cure for Lupus, however, lifestyle management can keep the symptoms in check, so as to ease the patient’s life. Lupus can also affect the person psychologically, so over the years, thousands of patients and several support groups have shared tips and guidelines to help other patients navigate the challenges, and embrace the journey with Lupus. In this article, we will cover all that and more.

What is Lupus? 

The body’s immune system is responsible for attacking pathogens and preventing disease, thereby preserving health and lifespan of the individual. To achieve this, the body’s immune system can clearly differentiate between the body’s tissues or organs,versus, an external pathogen. An Auto-immune disorder is one in which this differentiation is lost. The body’s immune system mistakes the body’s tissues, organs and cells as if they were external pathogens and starts attacking them. This leads to loss of function in those tissues or organs, leading to various complications.

There are several auto-immune disorders that affect humans[1], and Lupus is one of them. There are 2 types of Lupus. Discoid Lupus which is very rare, and Systemic Lupus Erythematosus (SLE) which is amounts to nearly 95% of all Lupus cases. Discoid Lupus causes skin rashes only, and the rashes are concentrated in just one area, or in rare cases, widespread in the body.

In contrast, SLE can affect various organs and tissues throughout the body. This includes the skin and mouth, hair, bone-joints, kidneys, blood and blood-vessels, brain and nervous system, heart and lungs, lymph nodes, gut, liver, spleen, pancreas, eyes, mouth, bones, muscles and the thyroid gland.

The focus of this article will be SLE only, so for the rest of the article, Lupus means SLE.

Causes and Risk Factors of Lupus 

There is no clear reason why Lupus develops, but there are some risk factors.

• Gender: Women are much more at risk than men and most cases of Lupus are of women
• An illness or infection can trigger Lupus as one of the outcomes
• Repeated exposure to strong sunlight
• Hormonal changes due to puberty, menopause, menstruation and pregnancy
• Tobacco consumption, especially smoking cigarettes
• Some medications trigger Lupus and this is called drug-induced lupus. However, the condition goes away once that medication is stopped.
• Genetic: Although lupus isnot directly passed on from a parent to a child, if there is a family history of Lupus, then the risk of developing the disease is high.
• Environmental: Some toxins in the ambient air or the workplace can trigger Lupus.

Signs and Symptoms of Lupus 

• A butterfly-shaped skin rash on the face, which covers the nose and cheeks. This is the most common and visible symptom of the disease
• Skin rashes, which become prominent after being out in the sun
• Abnormal sensitivity of exposed skin to sunlight
• Joint pains in one or more parts of the body
• Fatigue or extreme tiredness for no reason
• Ulcers in the mouth or in rare cases – nose
• Hair loss or bald patches on the scalp (called alopecia)
• Fever
• Unexplained weight loss
• Fingers that turn cold, become numb, first pale in colour, then blue, then red in colour
• Swelling of lymph glands in the armpits, neck, under the chin, and groin
• Depression and anxiety

Diagnosis and Treatment for Lupus 

One or more of the below tests are conducted to confirm or rule out Lupus:

• Anti-nuclear antibody (ANA) test
• Anti-double-stranded DNA (anti-dsDNA) antibody test
• Anti-Ro antibody test
• Antiphospholipid antibody test
• Kidney and liver function tests[3]
• Blood cell counts
• Scans and x-rays

There is no permanent cure for Lupus and treatment is only aimed at controlling the symptoms, so that the patient can lead a fairly normal life. Treatment options are primarily medication or drugs such as non-steroidal anti-inflammatory drugs (NSAIDs), steroids, antimalarials, disease-modifying anti-rheumatic drugs (DMARDs) and biological therapies. Lifestyle changes and stress management are equally important and that is what is covered in the next section.

Living with Lupus 

If you are a Lupus patient, there are several tips and tricks, guidelines, and dos and don’ts you need to be aware of.

Caring for one’s Physical Health

• Managing a Lupus flare-up: The reasons for a flare-up can vary from person to person and includes exposure to sunlight, too little rest, stress, infections, etc. Its important to keep a diary and make a note of the triggers, so that you can avoid or manage them better.
• Fatigue: The rheumatologist will prescribe medications[4] such as hydroxychloroquine to overcome severe fatigue. Exercise is also good, as it improves overall fitness and resistance to fatigue.
• Smoking: Smoking is a strict no-no for Lupus patients. If the patient is not able to quit smoking, the doctor will help with various remedies in this regard.
• Exercise: Exercises such as walking, light jogging, and lifting weights help strengthen the bones, reduce pain at bone-joints and improve stamina. This directly and indirectly helps reduce Lupus symptoms.
• Diet and Nutrition: A diet rich in omega-3 fatty acid sources such as oily fish; calcium sources such as green leafy vegetables and dairy; and Vitamin-D sources such as oranges, almond, spinach and soya, will be prescribed by the doctor.
• Sunlight: Mid-day sun must be avoided. You must wear a hat and or use sunscreen with a factor greater than 50, to reduce the risk of a flare-up.

At home

• Take your time: Once the diagnosis confirms Lupus, give yourself some time to let the reality sink in. Take adequate rest, and make adjustments to your routine so that you are not rushed all the time.
• Creating more time and space for yourself: Its important to slow down a bit. Make small changes to your daily routine. Delegate some of the work at home to family members. Ensure your family members understand what you are going through, and support you at all times.
• Seek help: Light to moderate fatigue may become the norm now. So,it’s important to seek help from friends and the extended family whenever required. If a relative can move in with you at home, that will be a big help.
• Learn to say no: In the initial days of your condition, friends and family members may not fully understand what you are going through, or the adjustments you need to make. They may make unreasonable demands of you. You should learn to say no and educate them on how they must help you.

At the workplace

Unlike the home, where family members see you closely and understand what you are going through, at work, things can be more challenging. You need to talk to the HR and your reporting manager about:

• Educating the team: Very few people are aware of Lupus and what a Lupus patient goes through all the time. You should make a list of pointers and have your reporting manager discuss the same with your team members. This will make them more empathetic and supportive.
• Flexibility in schedules: Arriving on time day after day can be stressing and trigger a flare-up sometime. Discuss with your manager about some flexibility either at the start or end of the day.
• Work from home: You must have the option to work from home at-least 2 days of the week. Keep the choice of these 2 days flexible. When you are not feeling so good, or there has been a bad flare-up, you could work from home that day.
• Offloading some of the work: If possible, some of the routine or lower-end jobs where your expertise is not required must be offloaded to juniors, to reduce your workload.
• Taking breaks: An occasional break or vacation is required to recoup from the stress and make you feel positive.
• Examining a change of role: If none of the above tips are working out for you, you should opt for a change in role, so that there is less stress, less responsibilities, and more flexibilities.

Caring for one’s mental Health

This is a very critical area, as depression and anxiety are quite common in Lupus patients. There are many people who are managing the condition well, so here are some guidelines from them:

• Care for yourself: Indulge in your favourite hobby or any activity which soothes your mind. Solving puzzles, enjoying music, watching TV, reading a book must all become a regular part of your life now.
• Move around: Exercise and being active (without stressing yourself too much), is important. These keep you physically healthy and mentally relaxed.
• Rest is very important: As a Lupus patient, you may need more rest. Increase the daily quota of sleep from 7 to 9 hours. Take naps during the day, and keep a dairy of what stresses you or causes fatigue so that you can reduce that.
• Stay positive: Yoga, meditation, chatting up with friends and family, shopping for groceries are all healthy ways of staying engaged positively. Attend social events, avoid isolation from near and dear, and avoid people who are gloomy about your condition.
• Be kind to yourself: You are not alone in suffering. Not just Lupus, there are many conditions and diseases that affect millions of people worldwide. It’s also not your fault that you developed the condition. So, accept the reality gracefully and overcome it with positivity.
• Develop partnerships: In addition to your spouse or significant other, have a good friend, a cousin, a neighbour or relative whom you can turn to in times of stress.
• Communicate well: Establish a good rapport with your healthcare team. Ask as many questions as you want. Communicate minor changes in your condition to them. All this helps optimize the treatment process.
• Reach out to support groups: There are many online Lupus forums and there could be some offline forums in your city. Join these forums and you will benefit from the rich exchange of information.

If you or a loved one is living with lupus, expert medical care can make all the difference. Kauvery Hospital is committed to comprehensive, compassionate treatment for autoimmune conditions[5] like lupus, with experienced specialists and state-of-the-art facilities. With branches in Chennai, Hosur, Salem, Tirunelveli, and Trichy, Kauvery Hospital is dedicated to supporting patients across South India on their health journey.

Frequently Asked Questions

1. What is Lupus?

Lupus is an autoimmune disorder where the immune system mistakenly attacks the body’s own tissues and organs, leading to complications across multiple systems.

2. What are the common symptoms of Lupus?

Symptoms include a butterfly rash, skin sensitivity to sunlight, joint pain, fatigue, ulcers, hair loss, fever, weight loss, color changes in fingers, swollen lymph nodes, and emotional changes like anxiety or depression.

3. What causes Lupus or increases the risk?

Risk factors include gender, infections, sunlight exposure, hormonal changes, smoking, certain medications, genetics, and environmental toxins.

4. How is Lupus diagnosed?

Diagnosis involves tests such as ANA, anti-dsDNA, anti-Ro, antiphospholipid antibodies, kidney and liver tests, blood counts, scans, and X-rays.

5. Is there a cure for Lupus?

There is no cure for Lupus. Treatment focuses on medications such as NSAIDs, steroids, antimalarials, DMARDs, biological therapies, and lifestyle changes to reduce symptoms.

6. How can Lupus patients manage daily life better?

Patients can manage lupus by identifying flare-up triggers, eating a healthy diet, avoiding sun exposure, exercising, seeking support at home and work, managing stress, prioritizing rest, and joining support groups.

7. When should I check in with my doctor for lupus?

Regular visits to a lupus clinic are important to monitor disease activity[6], manage flare-ups, and adjust your treatment plan as needed.

 

Kauvery Hospital is globally known for its multidisciplinary services at all its Centers of Excellence, and for its comprehensive, Avant-Grade technology, especially in diagnostics and remedial care in heart diseases, transplantation, vascular and neurosciences medicine. Located in the heart of Trichy (Tennur, Royal Road and Alexandria Road (Cantonment), Chennai (Alwarpet, Radial Road & Vadapalani), Hosur, Salem, Tirunelveli and Bengaluru, the hospital also renders adult and paediatric trauma care.

Chennai Alwarpet – 044 4000 6000 • Chennai Radial Road – 044 6111 6111 • Chennai Vadapalani – 044 4000 6000 • Trichy – Cantonment – 0431 4077777 • Trichy – Heartcity – 0431 4077777 • Trichy – Tennur – 0431 4022555 • Maa Kauvery Trichy – 0431 4077777 • Kauvery Cancer Institute, Trichy – 0431 4077777 • Hosur – 04344 272727 • Salem – 0427 2677777 • Tirunelveli – 0462 4006000 • Bengaluru – 080 6801 68011

Source URL: https://www.kauveryhospital.com/blog/rheumatology/living-with-lupus-navigating-challenges-and-embracing-the-journey/

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