Lupus, work and social life

Living with lupus does not necessarily prevent one from pursuing a professional activity, studies or an active social life.

However, the consequences of the disease vary greatly from person to person. Fatigue, pain, flare-ups, or certain organ damage may sometimes require a temporary or permanent adjustment to daily routines.

To continue one's professional activity

When the disease is stable, many people with lupus can continue their professional activities normally.

During a flare-up or when certain symptoms become more severe, it may be necessary to temporarily reduce activity or take time off work.

The situation needs to be assessed individually with the doctor.

Adapt the work when necessary

Depending on the consequences of the illness and the nature of the professional activity, certain adjustments may facilitate maintaining or resuming work.

It may be particularly useful to adapt working hours, pace of work or certain job conditions.

The occupational physician can participate in this discussion and propose adjustments adapted to the professional situation and state of health.

Anticipating the resumption of activity after a break

After a period of sick leave, returning to work may sometimes require preparation.

Depending on the situation, a gradual resumption or a temporary adaptation of the position may be considered with the professionals concerned.

The goal is to allow a resumption of activity that is compatible with the person's state of health and abilities.

Don't face difficulties alone

When illness has significant consequences on professional, social or daily life, various people can provide information and support.

Depending on the situation, it may be helpful to request:

• the attending physician;

• the occupational physician;

• a social worker;

• organizations responsible for supporting people facing chronic illness or disability;

• patient associations.

In France, the Departmental House for Disabled Persons (MDPH) can also inform and support people when the consequences of the illness justify it.

Preserving one's social life

Fatigue or periods of flare-ups can sometimes limit outings, family activities, or social interactions. Loved ones need to be involved.

It can be useful, and even desirable, for the healthcare professional to explain to the patient's family and friends that their abilities may vary depending on the stage of the illness and that some symptoms, particularly fatigue, are not always visible.

Maintaining, when possible, social activities adapted to one's state of health can help to preserve quality of life.

Key points to remember

Lupus does not systematically prevent someone from working, studying, or maintaining an active social life.

When illness causes difficulties, adjustments can be considered depending on the individual situation.

The medical team, the occupational physician and social support professionals can help to find the most suitable solutions, by involving those around them.

This information sheet is for general information purposes only. It does not replace a consultation or personalized medical advice for diagnosis and follow-up.

Sources: Health Insurance (Daily life with systemic lupus erythematosus; Medical monitoring of systemic lupus erythematosus); PNDS Systemic lupus in adults and children (2024) — Reference centers / RAISE / FAI²R network.

Content reviewed and validated by Professor Saïd Norou DIOP, specialist in Internal Medicine, medical advisor for TAHIRAH CARE.