I have lupus. What now?
Just diagnosed with lupus? Start here.
A new diagnosis can feel overwhelming. You do not have to navigate it alone, and you do not have to do everything today. Here are the five steps that most people in our community found helpful, in the order that usually helps most.
Acceptance did not happen overnight. But once I found my footing, I knew I did not want to carry this alone, and I did not want anyone else to have to either.
Step one
Learn what lupus actually is
Not what the internet says at 2am. Lupus is a chronic autoimmune condition in which the immune system attacks the body's own tissues. It is not contagious, it is not your fault, and it varies enormously from person to person. Understanding the basics makes every conversation with a clinician easier.
Understanding lupusStep two
Find support from people who understand
One of the hardest parts of lupus is being unwell in ways other people cannot see. A peer support group means you can describe a symptom without having to justify it. LFA runs support groups across Kenya and connects members across the continent.
Find a support groupStep three
Understand your treatment and what to ask
Ask your clinician what each medicine is for, what side effects to watch for, how you will be monitored, and what should bring you back sooner. Write the answers down. An informed patient is better positioned to participate in decisions about their own care.
Treatment & managementStep four
Connect with other warriors near you
Practical knowledge travels through the community faster than anywhere else: which clinics have a rheumatologist, how others manage the cost of medicines, what helps on a bad day. Join as a member and you join that network.
Become a memberStep five
Take care of your mental wellbeing
A chronic diagnosis is a loss as well as a medical event, and grief, anger and fear are normal responses. Lupus care that stops at medication is incomplete. Seek psychosocial support early rather than waiting until you are struggling.
Lupus & mental healthThings that are true, even on a hard day
- You did not cause this.
- A diagnosis is information, not a verdict.
- Many people with lupus work, study and raise families.
- Looking well and feeling well are not the same thing, and you are allowed to say so.
- There is a whole community here, ready to walk with you.
Take this to your next appointment
Use our symptom reflection tool to organise what you have been experiencing, then bring the list with you. It makes the conversation far more useful.
Open the toolIf you are in crisis or thinking about harming yourself, please reach out to a healthcare professional or a trusted person today. Call or WhatsApp LFA on +254 142 851 978 and we will help you find support.
You are not the first
Others have walked this road
Reading someone else's story is often the moment a new diagnosis stops feeling isolating.
Talk to someone who gets it
Call or WhatsApp our team and we will connect you with a peer support group near you. There is no form to fill in first, and no cost to talk.