Lupus
Supporting someone with lupus
Know what to say tonight. Have a plan together for fatigue, sun and flares in four weeks.
24 situations with what to say · 26 straight answers · a 4-week plan with something to do together each session · 10 cards and plans · with Family: short videos to share with the rest of the family
Reviewed 2026-11-09 · next review 2027-11-09
The 4-week plan
Week 1
Understand and believe
- What's really going on
- A day from the inside
- "But you look so well"
Week 2
Talk
- Validation: the skill that helps most Free
- What to say instead Free
- When it goes wrong
Week 3
Plan together
- Energy, rest and the sun
- Help without taking over
- When it flares
Week 4
Family and you
- The two of you
- Children, pregnancy and the wider family
- Looking after yourself
Right now: situation cards
- Chest pain, breathlessness, a fit or sudden confusion Free
- They cancelled plans again Free
- They're in a lot of pain right now Free
- They snapped at me
- They're crying and I don't know why
- They say "I feel useless" or "I'm a burden"
- A relative says they just need to push themselves Free
- Someone says "But they look so well"
- There's a family event tonight
- The children are asking questions
- There's a doctor's appointment tomorrow
- They want to try a treatment I'm unsure about
- Sex and closeness have stopped
- It's a good day and they want to do everything
- They have a new or different symptom
- I'm angry, and then I feel guilty Free
- I'm running on empty
- Part of me doubts it's that bad
- They talk about not wanting to live Free
- They have a fever or an infection
- A flare has started Free
- The plans involve a lot of sun
- They forgot something important, again
- They're upset about hair loss or a rash
Toolkit
- Say this, not that
- Lupus: myths and facts
- What I need on a bad day
- Our weekly check-in
- Our week: energy planner
- Who does what
- Our flare plan
- Questions for the appointment
- Explaining lupus to children
- Where to find help
With Family
- Four extra logins for relatives
- Share links to the short videos for anyone who doubts
- A story to read aloud to children
- Letter templates for work, school and family
Questions families ask
- What is lupus, really?
- Is lupus serious?
- Can you catch lupus?
- What causes lupus?
- Why did it take so long to diagnose?
- Will it get better?
- Is it my fault, or theirs?
- Will our children get it?
- Why are they so tired?
- What is lupus brain fog?
- Why does the sun matter so much?
- Why do their fingers go white in the cold?
- What is a lupus flare?
- When is it not "just the lupus"?
- Why do they keep checking the kidneys?
- What actually helps?
- Why hydroxychloroquine, and for how long?
- Why do they need eye checks?
- Why steroids, if they have side effects?
- What are immunosuppressants and biologics?
- Are they more likely to catch things?
- Can they have a baby?
- Can they keep working?
- What about sex?
- They seem low and anxious. Is that the lupus?
- Where can I get support for myself?
Free to read
The start, two sessions on what to say, 7 situation cards, 6 questions and the card "Say this, not that". Open them in the app; no payment needed.
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