Chronic Illness Resources
I went looking for this and it didn’t exist. Not in one place, anyway.
The organizations were out there. The programs were out there. Every one of them sat behind a different search, a different form, a different phone tree, on a day when I’d already spent everything I had getting through the appointment. The information existed. The finding was the part nobody was going to do for me. So I did it, and this is that list.
Financial and disability.
Thirteen sections. SSDI and SSI, and why the denial-then-appeal sequence isn’t a defect in you. ABLE accounts, so saving doesn’t cost you your benefits. Accommodations worth asking for at work, and what to do when they’re refused. Insurance appeals, Medicare, Medicaid, and the home-based care waivers nobody mentions. Prescription costs, emergency grants, housing, transportation to appointments, student loans, free legal aid.
Emotional and relational.
Grief that has no medical code and no cultural container. Identity, when your capacities stop matching your memory of them. How to find a therapist who won’t do harm, and how to pay for one. Peer spaces, and how to tell a good one from a bad one. Sex and partnered life, which almost everything else leaves out.
When you’re at a low point.
Short pages, small tasks, written for the hour you’re actually in. One thing to do in the next hour. One thing today. One thing this week. What to say to a crisis line, which turns out to be one sentence.
Plus three appendices: condition-specific organizations from lupus and MS to POTS, MCAS, Ehlers-Danlos, ME/CFS, endometriosis, migraine and rare disease; a California state supplement; and a directory of every resource in the whole thing in one table, for when you already know what you’re looking for.
The crisis lines are in the opening pages, before anything else, so nobody has to read past them to find them.
What it isn’t.
It doesn’t do the applying for you and it won’t fill anything out. What it does is take the locating off your plate, and on a bad week, locating is most of the work.
Everything named is a United States program or organization as of publication. Eligibility changes, funding changes, and programs close, so check current details at the source before you count on any of it. I’m not a lawyer, a doctor, or a financial advisor, and none of this is that kind of advice.
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