Online learning for today’s arthritis patient
Lesson 5 – Lupus across life stages, reproductive health, intimacy, and work
In previous lessons, we explored what lupus is, how it is diagnosed and monitored, treatment approaches, and practical strategies for living well with the disease.
Lupus can also affect many important aspects of life beyond physical health. Decisions about work, relationships, family planning, pregnancy, caregiving responsibilities, and future goals may all be influenced by living with lupus.
Many people living with lupus successfully build careers, maintain meaningful relationships, raise families, and pursue their personal goals. But doing so often requires planning, communication, and support.
In this lesson, we explore how lupus can affect different stages of life and discuss practical strategies for navigating reproductive health, sexual health, relationships, employment, and caregiving responsibilities.
Please note that there are several forms of lupus, but the most common and serious form is systemic lupus erythematosus (SLE). When people use the term “lupus”, they are usually referring to SLE. This Course focuses primarily on SLE, which is most often associated with arthritis, flares, and involvement of organs such as the kidneys, heart, lungs, and brain.
Employment and workplace accommodations
Many people living with lupus continue to work successfully throughout their lives. Work can provide more than financial security. It can also offer purpose, social connection, independence, and a sense of accomplishment.
At the same time, lupus symptoms such as fatigue, pain, brain fog, sensitivity to sunlight, and unpredictable flares can make it more difficult to meet workplace demands. Some people find that symptoms affect their productivity, concentration, stamina, or ability to maintain a regular work schedule.
Research has shown that maintaining employment can have important benefits for both physical and emotional health. However, many people living with lupus face difficult decisions about whether to disclose their diagnosis to an employer, request accommodations, or modify their work responsibilities. Some worry about stigma, misunderstandings, or the potential impact on career opportunities.
The good news is that workplace accommodations can often help people remain productive and continue participating in the workforce. Accommodations are adjustments that help employees perform their jobs safely and effectively while managing health challenges.
Examples of workplace accommodations may include:
- Flexible scheduling or modified work hours
- Hybrid or remote work arrangements
- Additional rest breaks during the day
- Time off for medical appointments
- Ergonomic workstations or supportive equipment
- Reduced physical demands
- Adjustments to lighting or environmental conditions
- Modified duties during periods of increased symptoms
- Temporary part-time schedules or gradual return-to-work plans
Not every person with lupus will need accommodations, and not everyone will choose to disclose their diagnosis to an employer. Decisions about disclosure are highly personal and may depend on workplace culture, job responsibilities, symptom severity, and individual circumstances.
Deciding whether to tell your employer
One of the most difficult workplace decisions for many people living with lupus is whether to tell an employer about their condition.
There is no single right answer. Some people choose to share information about their lupus because they need workplace accommodations or support. Others prefer to keep their health information private, particularly if their symptoms are well controlled and do not affect their ability to do their job.
The decision to disclose may depend on several factors, including:
- Whether symptoms are affecting work performance
- The need for workplace accommodations
- Workplace culture and relationships with supervisors
- Job security and employment status
- Personal comfort discussing about health information
Some people worry that disclosing a chronic disease could lead to misunderstandings, stigma, or concerns about career advancement. Others find that sharing information helps employers better understand their needs and allows accommodations to be put in place.
Remember that you are not required to share every detail about your disease. If accommodations are needed, discussions can often focus on what support or adjustments would help you perform your job successfully rather than on the specifics of your diagnosis.
If you are unsure whether to disclose your lupus, consider discussing the decision with your healthcare team, human resources department, union representative, or another trusted advisor.
Reproductive health and family planning
For many people living with lupus, decisions about pregnancy and family planning can feel complicated. Disease activity, medications, fertility concerns, and potential pregnancy risks may all influence decision-making.
Fortunately, many people with lupus can have healthy pregnancies and families. The key is planning ahead and having open conversations with your healthcare team.
Important topics to discuss include:
- Pregnancy goals and timing
- Disease activity and disease control
- Medication safety before and during pregnancy
- Fertility concerns
- Contraception options
- Risks related to lupus and pregnancy
- Monitoring requirements during pregnancy
These discussions are most effective when they happen before pregnancy is being actively considered.
Pregnancy and lupus
Many people living with lupus can have successful pregnancies. However, lupus pregnancies often require additional planning and monitoring. The safest pregnancies generally occur when lupus has been stable and well controlled for at least six months before conception.
Pregnancy is often described as a partnership between the patient and healthcare team. Planning ahead helps reduce risks and supports healthier outcomes for both parent and baby.
Doctors or specialists may recommend:
- Reviewing medications before pregnancy
- Discussing breastfeeding and medication safety
- Assessing disease activity
- Evaluating kidney involvement and other organ involvement
- Reviewing blood tests
- Coordinating care between specialists
- Developing a monitoring plan
Contraception and medication conversations
Contraception is an important component of reproductive health planning for many people with lupus. Some medications used to treat lupus may not be appropriate during pregnancy. In addition, some forms of contraception may be more suitable than others depending on disease activity, blood clotting risk, and other health factors.
The best contraceptive choice varies from person to person.
Questions to discuss with your healthcare team include:
- Which contraceptive methods are safest for me?
- Could my medications affect pregnancy?
- Are there medications that should be changed before pregnancy?
- How far in advance should pregnancy planning begin?
These conversations help ensure that reproductive decisions align with both health needs and personal goals.
Hormonal changes
Perimenopause, the transitional period leading up to menopause when hormone levels begin to change, and menopause itself can cause symptoms that sometimes overlap with those of lupus symptoms, including:
- Fatigue
- Sleep disturbances
- Mood changes
- Joint pain
- Difficulty concentrating
- Changes in sexual wellbeing
Because many of these symptoms can occur in both lupus and hormonal transitions, it can sometimes be difficult to determine what is causing a change in how you feel. If symptoms are affecting quality of life, it is important to discuss them with your healthcare team so that appropriate evaluation and management strategies can be considered.
Sexual health and intimacy
Sexual health and intimacy are important parts of overall wellbeing, yet they are rarely discussed during healthcare visits. Lupus can affect intimacy in many ways. Fatigue, pain, stiffness, medication side effects, emotional stress, anxiety, depression, and body image concerns may all influence sexual wellbeing.
These challenges are common and should not be viewed as something people must simply accept or manage alone. Open communication with doctors or specialists can help identify strategies that improve comfort, confidence, and intimacy.
Body confidence and self-image
Living with lupus can sometimes affect how people feel about themselves.
Visible signs of disease, medication side effects, hair loss, weight changes, rashes, fatigue, and physical limitations may affect confidence and self-esteem. Some people report feeling self-conscious about changes in appearance. Others worry about how lupus affects relationships, dating, intimacy, or social participation.
It is important to remember that these feelings are common and understandable.
Building confidence often involves:
- Focusing on overall wellbeing rather than appearance alone
- Connecting with supportive people
- Seeking counselling or mental health support when needed
- Learning more about lupus and its effects
- Practicing self-compassion
Relationships and caregiving
Lupus affects not only individuals but also the people around them. Partners, family members, friends, children, and caregivers may all be affected by the challenges of living with a chronic illness.
People living with lupus may sometimes feel guilty about:
- Cancelling plans
- Needing help
- Asking others to share responsibilities
- Having unpredictable symptoms
Open communication can help others better understand what you are experiencing. Many people find that educating loved ones about lupus improves understanding and strengthens support systems.
Questions to ask your healthcare team
Consider discussing the following questions with your healthcare team:
- Is my lupus well controlled enough to consider pregnancy?
- Are my medications safe if I am planning a pregnancy?
- Which contraception options are appropriate for me?
- Could menopause be affecting my symptoms?
- Are my symptoms affecting sexual health or intimacy?
- What resources are available to help with body image or emotional wellbeing?
- What workplace accommodations might help me manage lupus at work?
- Are there supports available if caregiving responsibilities are becoming difficult to manage?
- What specialists should be involved in my reproductive health care?
- Should I consider discussing my lupus with my employer, and what workplace accommodations might be helpful for me?
- What information might I need if I decide to request workplace accommodations?
Remember that reproductive health, sexual health, employment concerns, and quality-of-life issues are important aspects of lupus care and deserve discussion.
Learn from an Expert
References
- Arthritis Consumer Experts. National Survey on Lupus in Canada: Part Two – Health Care Experiences and Unmet Needs of People Living with Lupus in Canada.
- Megan E. B. Clowse et al. Provider perceptions on the management of lupus during pregnancy: barriers to improved care. Lupus. 2019;28(1):86–93.
- EULAR recommendations for women’s health and the management of family planning, assisted reproduction, pregnancy and menopause in patients with systemic lupus erythematosus and/or antiphospholipid syndrome (2017)
- Cardwell FS, Dixon J, Clarke AE, Elliott SJ. Canadian workplace experiences of systemic lupus erythematosus (SLE). Lupus Sci Med. 2021 Sep;8(1):e000536.
- Lupus Foundation of America. Pregnancy and Lupus.
- Lupus Canada. Pregnancy and Family Planning.