Living with lupus
Understanding your condition, recognising changes in your symptoms, attending appointments, taking treatment as prescribed, and looking after your emotional and social wellbeing all form part of living well with lupus.
Living well
At LFA, we believe that people living with lupus should have access to reliable information, supportive communities, and the knowledge they need to participate meaningfully in decisions about their care.
Living well does not mean never having a bad day. It means having enough understanding of your own body, and enough support around you, that the bad days do not take everything with them.
Always stay positive and avoid constantly dwelling on thoughts like “I am sick”. When you are not busy, try to engage yourself in simple activities to keep your mind occupied.
This information is provided for education and awareness and is not a substitute for professional medical advice, diagnosis or treatment. If you have concerns about your symptoms or health, please speak to a qualified healthcare professional.
Lupus & mental health
Depression is listed among the recognised manifestations of lupus, and living with an unpredictable chronic illness carries its own emotional weight. Fatigue, pain, uncertainty about the future, financial pressure and being disbelieved all take a toll.
None of that is weakness. It is a normal response to a genuinely difficult situation, and it deserves the same attention as any other symptom.
LFA works with mental health partners including Vimbo Health and The Mary Ben Foundation to expand access to psychosocial support for people affected by lupus.
Lupus & work
Every day is a new battle in a new place with unpredictable pain levels.
Living with lupus can affect many aspects of everyday life, including how we work, manage fatigue, navigate disclosure, and communicate our needs in the workplace.
In 2023, lupus advocate Winnie Opondo shared her experience of navigating lupus and work, including practical considerations for people living with lupus and ways employers can create more supportive workplaces.
Read the full article, originally published by The Star.
I lost my very first job for illness reasons.
More than 90 per cent of people with lupus are women, and women develop lupus roughly nine times more often than men. It most often begins between the ages of 15 and 45, which are also the years when many women are building careers, studying and raising families.
That timing matters. It means lupus frequently arrives alongside the heaviest social and economic demands of a person's life, which is one reason support and workplace understanding are so important.
Lupus does not significantly affect fertility, and many women with lupus have healthy pregnancies. Planning matters: conceiving while the disease is in remission reduces the risk of flares.
Some medicines, such as methotrexate, are not safe in pregnancy, while hydroxychloroquine and prednisolone are considered safe. Antiphospholipid and anti-Ro antibodies carry specific risks that your team will monitor. Plan pregnancy with your rheumatologist and obstetric team wherever possible.
See the pregnancy FAQLupus can begin in childhood and adolescence. Frequent absence and the unpredictability of illness can make school a struggle, and young people are often misunderstood by teachers and peers who cannot see what is wrong.
Schools that understand the condition make an enormous difference, as do caregivers who are supported themselves. If you care for a young person with lupus, you are not alone in it.
Caregiver storiesMyths & facts
Ask anyone with lupus what hurts most and surprisingly often it is not the pain, it is not being believed. Misunderstanding is one of the heaviest burdens our community carries. Select a card to turn it over.
Join more than 500 warriors and caregivers across seven countries who share what they have learned, and lean on each other when it is hard.
