How Can an Occupational Therapist Help?
What is Lupus and How Can an Occupational Therapist Help?
Lupus is a complex and often misunderstood autoimmune disease that affects millions of people worldwide. While it presents differently from one person to the next, lupus can significantly impact a person’s ability to live a normal, active life. Occupational therapists (OTs) play a vital role in helping individuals manage the challenges of lupus, not only for the person diagnosed but also for their families and support systems.
This blog explores what lupus is, how it affects daily life, and how occupational therapy can provide practical tools and emotional support to manage the condition effectively.
Understanding Lupus
Lupus, or systemic lupus erythematosus (SLE), is a chronic autoimmune disease in which the immune system mistakenly attacks healthy tissues. This immune system malfunction can lead to widespread inflammation and tissue damage in various organs, including the skin, joints, kidneys, heart, lungs, brain, and blood cells.
Common Symptoms of Lupus:
- Fatigue (often severe)
- Joint pain and swelling
- Muscle aches
- Skin rashes, including the characteristic “butterfly” rash on the face
- Photosensitivity (sensitivity to sunlight)
- Fever
- Mouth ulcers
- Hair loss
- Cognitive difficulties (“lupus fog”)
Lupus is often referred to as an “invisible illness” because many of its symptoms, especially fatigue and pain, are not outwardly visible. The disease also tends to flare and remit, meaning symptoms can worsen unexpectedly and then improve. This unpredictability can be especially challenging.
The Impact of Lupus on Daily Life
Living with lupus often means coping with persistent fatigue, chronic pain, and fluctuating levels of energy. This can affect every aspect of life—work, school, parenting, housekeeping, and social relationships. Simple daily tasks may become overwhelming, and the emotional toll of living with a chronic condition can lead to anxiety or depression.
People with lupus may also feel isolated or misunderstood, as others may not fully grasp the severity of their condition. Managing medications, appointments, and the side effects of treatment can become a full-time job in itself.
That’s where occupational therapy can make a significant difference.
How Occupational Therapy Helps People with Lupus
Occupational therapists specialise in helping individuals engage in the activities that are most meaningful to them—whether that’s cooking dinner, going to work, playing with their children, or pursuing hobbies. For people with lupus, OTs provide a tailored approach to managing symptoms, preserving energy, and improving quality of life.
Here are several key ways an occupational therapist can support someone with lupus:
1. Energy Conservation Techniques
Fatigue is one of the most debilitating symptoms of lupus. OTs teach energy conservation strategies that allow individuals to balance activity with rest. These may include:
- Pacing daily routines
- Prioritizing tasks
- Using assistive devices to reduce strain
- Delegating responsibilities when possible
- Planning activities during times of day when energy is highest
By managing fatigue more effectively, individuals can maintain independence and feel more in control of their lives.
2. Pain and Joint Management
Joint pain and stiffness are common in lupus, and they can hinder daily functioning. Understanding what is going on and what you can do about it is critical to effective pain management. OTs can not only suggest adaptive tools and techniques to reduce strain on the joints, but are also trained to provide specialised education that reduces fear and improves function.
Other strategies OTs use to manage painful joints include:
- Using ergonomic utensils and pens
- Wearing splints or supports when needed
- Learning joint protection techniques for daily activities like opening jars or getting dressed
Occupational therapists also collaborate with physiotherapists to ensure that exercise and movement routines support, rather than aggravate, symptoms.
3. Cognitive Support
“Lupus fog,” or cognitive dysfunction, can make it difficult to concentrate, remember things, or make decisions. An OT can help develop strategies to work around these challenges:
- Setting up reminders and using planners or apps
- Breaking tasks into manageable steps
- Organizing the home or workspace to reduce distractions and improve efficiency
4. Emotional and Mental Health Support
While OTs do not provide traditional psychotherapy, they can provide psychological support and improve mental health by helping clients develop practical strategies for mental well-being by identifying meaningful activities and building routines that promote well-being. They also teach stress management and mindfulness techniques, which can reduce flares and support mental health.
When appropriate, OTs can refer clients to psychologists or counsellors and collaborate as part of a wider care team.
5. Workplace and Lifestyle Adaptations
Lupus can interfere with a person’s ability to work. Occupational therapists can assess work environments and suggest modifications or accommodations. That may involve:
- Flexible work hours
- Adjusted workloads
- Ergonomic workstation setup
- Support with navigating workplace communication or disability benefits
In the home, OTs can suggest modifications to make living spaces more accessible and easier to manage during flares.
6. Support for Families and Caregivers
Lupus doesn’t just affect the individual—it impacts the whole family. OTs can work with family members to help them understand the disease, recognize limitations, and offer support without encouraging dependence.
They may also:
- Teach family members how to assist with tasks safely
- Suggest ways to maintain shared family routines
- Help set realistic expectations and improve communication
This holistic support strengthens relationships and reduces the emotional burden for everyone involved.
Living Well with Lupus
There is no cure for lupus, but with the right support, many people live active and meaningful lives. Occupational therapists are uniquely positioned to help clients with lupus not just manage their symptoms but also reclaim their independence, participate in valued activities, and build a life that adapts to their changing needs.
The journey with lupus can be unpredictable, but individuals don’t have to face it alone. Through occupational therapy, both the person living with lupus and their support system can learn practical tools, improve daily function, and regain a sense of control.