A lupus diagnosis can answer one question while creating many more.
What does this mean for me? What happens next? Will I need treatment? What should I ask my rheumatologist? How will lupus affect everyday life?
If you have recently been diagnosed, it can be tempting to try to understand everything at once.
You don’t have to.
Start with what you need today
Lupus affects people differently. Your symptoms, treatment and monitoring will depend on your own circumstances and the parts of your body affected.
That means there isn’t a single roadmap that everyone follows.
What can help is having clear, reliable information available when you need it — whether you are trying to understand your diagnosis, preparing for an appointment or simply looking for an answer to a question that has been worrying you.
We’ve brought together our lupus information so you can start with what matters to you today and come back to the rest when you’re ready.
Start here: Newly diagnosed with lupus →
Understand what happens next
One of the first things many people want to understand after diagnosis is what their care might look like.
Lupus treatment is individual. Your healthcare team will consider your symptoms, disease activity and which parts of your body are affected when deciding what treatment and monitoring are appropriate for you.
You don’t need to become an expert in every medicine or test.
But understanding why your treatment is being recommended, what monitoring you may need and who to contact if something changes can help you feel better prepared for conversations with your healthcare team.
Explore our guide to lupus treatment →
Make the most of your rheumatology appointments
Appointments can move quickly, particularly when there is a lot you want to discuss.
A little preparation beforehand can make it easier to remember what has changed, which symptoms you want to mention and the questions you would like answered.
Our Preparing for Your Rheumatology Appointment checklist can help you think through:
- new or changing symptoms
- your current medicines
- side effects or concerns
- questions you want to ask
- tests or monitoring
- what happens next after your appointment
You don’t have to complete everything. Simply use the parts that are useful to you.
Prepare for your next rheumatology appointment →
There will probably be more questions
And that is completely normal.
You might wonder whether a particular symptom could be connected to lupus. You may have questions about fatigue, medication, flares, sun protection, pregnancy or everyday life.
Some questions will be answered by your healthcare team. Others may arise between appointments.
Our Lupus Questions and Answers page brings together straightforward answers to many of the questions people affected by lupus commonly ask, with links to more detailed information when you want to explore a topic further.
Read common questions about lupus →
You don’t have to learn everything today
Living with a long-term condition means that the information you need can change over time.
Something that feels important immediately after diagnosis may be very different from what you need six months or several years later.
That is why our lupus information is designed to be something you can return to.
Our Understanding Lupus area now brings together information about symptoms, diagnosis, treatment, living with lupus, complications and organ involvement, pregnancy and family planning, practical tools and answers to common questions.
Start wherever you are in your journey.
One step at a time
A diagnosis of lupus can feel like a lot to take in.
You do not need to understand everything about lupus today.
Start with the question that matters most to you. Write down what you want to ask. Use your appointments to understand your own care. And come back to reliable information whenever you need it.
If you’ve recently been diagnosed with lupus, start here.
The information provided by The Hibbs Lupus Trust is for general guidance and does not replace advice from your GP, rheumatologist or other healthcare professional. Your own healthcare team should guide decisions about your treatment and care.
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