Resource Library
“What Nobody Told Me” — honest guides written by spoonies, for spoonies.
What Nobody Told Me When I Was Diagnosed with Lupus
The honest, spoonie-written guide I wish I had on day one — covering what to actually expect in those first months.
Understanding Your Diagnosis
What Nobody Told Me When I Was Diagnosed with Lupus
The honest, spoonie-written guide I wish I had on day one — covering what to actually expect in those first months.
POTS: Why Standing Up Is Harder Than It Sounds
A real-talk explanation of what's happening in your body, written by someone who has stood up and immediately had to sit back down.
Post Viral Onset: When Illness Starts After a Virus
What post-viral onset of POTS and autoimmune conditions actually means, why it happens, what the research says, and what your trajectory might look like.
Symptoms Explained
The Lupus Flare Survival Guide
Everything from what to have stocked in your flare kit to how to communicate with your doctor when you're too exhausted to explain.
Managing Brain Fog: Real Strategies That Actually Help
From the cognitive symptoms of lupus and POTS dysautonomia to practical tools that make daily life more manageable.
Talking to Your Doctor
Workplace & School Rights
Your ADA Rights at Work — In Plain English
What the Americans with Disabilities Act actually covers for chronic illness, what 'reasonable accommodation' means, and how to ask for what you need.
School Accommodations with Chronic Illness: What You're Entitled To
IEPs, 504 plans, university disability services — your rights explained so you can actually use them.
Relationships & Explaining Your Illness
How to Explain POTS to Someone Who Doesn't Get It
Scripts and analogies that actually work — for family, coworkers, and that one person who keeps telling you to 'drink more water.'
Talking to Your Partner About Chronic Illness
How to have the hard conversations about limitations, needs, and the emotional weight — without feeling like a burden.
This is not legal or financial advice. It is just what we wish someone had told us.
💰 Money & Illness
Patient Assistance Programs for Common Chronic Illness Medications
Free and low-cost medication programs for hydroxychloroquine, ivabradine, fludrocortisone, and mycophenolate — with direct links to manufacturer programs.
How to Negotiate a Medical Bill (With a Word-for-Word Script)
Yes, you can negotiate. Medical bills are not fixed prices. Here's exactly what to say when you call the billing department.
How to Appeal an Insurance Denial: Step by Step
Insurance denials are not final. Here's how to appeal, what to include, and how to escalate if the first appeal fails.
GoodRx and Alternatives: A Plain-Language Guide
GoodRx, Mark Cuban's Cost Plus Drugs, NeedyMeds — what they are, how they work, and which one is right for your medication.
Disability Benefits and the Catch-22: Explained Simply
SSDI and SSI explained in plain language — including the frustrating catch-22 of proving disability while you're still trying to function.
Free and Low-Cost Lab Work Options
How to get labs done without a doctor's order or insurance — including walk-in lab services, health fairs, and when to use them.
Healthcare.gov Options When You're Chronically Ill and Between Jobs
What to actually look for in ACA marketplace plans when you have a chronic illness — so you don't accidentally choose the plan that covers nothing.