You do not have to understand any of this yet.
If you found this page because something changed recently — a diagnosis, a sentence in an appointment you did not catch, a search at two in the morning — being overwhelmed is a completely reasonable place to be. A lot of unfamiliar language arrives all at once, and nobody hands you a glossary with it.
So: this page is not a test, and this site is not homework. You can read it in any order, stop partway, and come back in six months. Nothing here expects you to already know what any of it means.
Please read this before anything else. Nothing on this site is medical advice, and nothing here can substitute for care from the people who actually know your case. Keli is not a doctor. This is a personal site written by someone living with lupus, alongside a reference section that reports what sources say, with the source and a confidence tier shown on every entry. Decisions about your health belong to you and your clinical team — not to a website, including this one.
How this site is put together
There are two kinds of writing here, and they are kept deliberately apart. That separation is the most important design decision on the site, so it is worth thirty seconds of your time.
Health writing goes wrong when “here is what happened to me” and “here is what the sources say” get blended into one confident voice. Then a personal story starts reading like instructions. When you are unwell and looking for answers, that blend is the thing most likely to hurt you — so on this site the two never share a page, a voice, or a look.
The experience layer
Keli’s own writing, in first person — whatever she chooses to write about her own life with lupus.
It carries no sourcing burden, because it is not making a claim about the world — it is one person describing her own life. And it never says, or implies, that what happened to her will happen to you. Your situation is your own, and this layer does not pretend otherwise.
Read it for company, not for instructions.
The reference layer
Neutral entries that report what sources actually say — with the source shown, and a confidence tier printed on the page.
Nothing goes in this layer because it sounds right or because everyone repeats it. If a statement cannot be traced to a source, it does not get published here. That is slower. It is the only version of this worth doing.
Read it for what is known, and for how well it is known.
Whichever page you land on, you should be able to tell within a second which of the two you are reading. If you ever cannot, that is a mistake on this site’s part, not yours — and you are welcome to say so.
How to read the confidence tiers
Every entry in the reference layer carries a letter. It tells you how strong the backing behind that entry is — not how true something feels, and not how much anyone likes it.
The letters are labels, not a ranking, and the list below is not in order of strength. B is the strongest general backing on this site. A is strong for one person’s own case and does not generalize to anyone else. C is not evidence at all — only a record of what people report. D never appears here.
- A — clinician-confirmed. Confirmed directly by a qualified clinician for one person’s own case, rather than drawn from published material. Strong for that person. It is still one person’s case, never a general rule, and never a recommendation for anyone else.
- B — published by a medical body. Stated by a recognized medical organization or in peer-reviewed literature, and cited so you can go read the original yourself.
- C — patient-reported. Something widely described by people living with lupus, cited to where it was reported, and explicitly labeled as not evidence. Many people saying a thing is not the same as the thing being established. C is published only with that frame attached, never bare.
- D — unverified. Never published here. If a statement cannot reach at least a cited C, it stays off the site entirely — not softened, not hedged, not posted with a shrug. On a health topic, an unsourced claim is worse than a gap.
A tier is a statement about the backing, not a recommendation. Nothing on this site — at any tier — is telling you what to do. That conversation belongs with your own clinicians.
Why parts of this site are still empty
You will find sections here that are clearly unfinished. That is on purpose, and it is better said plainly than papered over.
The medical and reference material is still being gathered and sourced. It will arrive slowly, with citations and a tier on each entry, because getting it right matters more than getting it up. Filling these pages quickly would mean writing from memory rather than from sources — and on a lupus site, confident writing with nothing behind it is the thing most likely to do harm.
Coming soon. A plain-language orientation for someone newly diagnosed will go here — built from sourced material, cited entry by entry, and carrying a confidence tier. It stays empty until it can be done that way.
The most useful person is not on this website
It is your own doctor.
No site can see your history, your test results, or the specifics of your situation. Your clinical team can. Whatever you take away from here, the single most valuable thing you can do with it is bring your questions to the people treating you — and keep asking until you get answers you actually understand.
If this site is doing its job, it helps you walk into that appointment with better questions. It is not trying to replace it.
A note from Keli
Coming soon. Keli is writing this part herself.
Where to go next
There is no correct order. Start wherever makes sense to you.
- What the Research Says — the reference layer. Entries that report what sources say, each one showing its source and its confidence tier. Still filling in.
- My Experience — the experience layer. Keli’s own writing, in her own voice, about her own life.
- Community — a private space for people living with lupus. It is not open yet, on purpose: a support space with nothing in it and no privacy policy behind it would waste the one chance to do it properly.
- The lupus hub — everything on this half of the site, in one place.
Medical disclaimer. This site is written by a person living with lupus and is published for information and company, not as medical care. It is not medical advice, diagnosis, or treatment, and it does not create a clinician–patient relationship. Nothing described here is offered as a way to treat, prevent, or cure lupus or any symptom of it. Always talk to a qualified healthcare professional about your own situation, and never delay or stop care because of something you read here. If you think you are having a medical emergency, contact emergency services immediately.