Perhaps “good advice” is a threat. Who wants unsolicited advice? (You know I meant Open Thread, right? ) One guide offers ideas for how friends of someone with chronic whatever can be supportive, for real. The other guide is a compendium of many: how to get on various helpful programs like SS, Medicare, Medicaid, subsidized housing and its corollary guides How to Be (Poor, Homebound) and Everything No One Ever Tells You After You Get Approved. Here is the cheat sheet TL;DR version with links to all the specific guides.
Let’s begin my copy/paste special open threat edition with some helpful advice for friends. Most of the ideas boil down to “believe us” and “don’t give us up even when we cancel plans often.” It’s written by Lyme patients but applies to most health/disability situations.
- Don’t suggest a symptom is something other than what it is. Be a good listener. Don’t rewrite the script.
- Don’t give up on us when we keep canceling plans. Understand that sometimes we can do things, and sometimes we can’t. Keep contacting us if you don’t hear from us, and be prepared to come over and make tea and just hang out. It might seem boring to you but could be the highlight of our week.
- Don’t tell me to just get over it, I can’t just wish this away.
- Just listen! Don’t try to fix it!
The How To Get On guides aren’t easily summarized and don’t have snappy one-liners to quote. So I’ve focused on the How to Get Medicaid (etc) subsection: How to Have Great Doctor Visits That Create Great Records although we know that sometimes this is impossible as variation among medical folks is as large as variation among humans in general.
- “When I am choosing a doctor, I always tell them I am on disability and ask if they will assist with my reviews. If they will not help me, they are not the right doctor for me.”
- Talk to your doctor about the medical reasons you cannot work. You cannot get on disability because you have problems with transportation or childcare or unemployment or a bad boss. Tell your doctor about your symptoms and how your impairments keep you from being able to work.
- Many lawyers recommend not to chat about your life with your doctor. They suggest to focus on your symptoms, medical treatment and disabling condition. Sometimes small innocent remarks can be written down in a way that can be misunderstood. According to the attorney Scott Davis, topics that sometimes cause problems in medical records are: caring for pets, caring for children, participating in activities, traveling, and alcohol and drug use.
- If you have good days and bad days, try answering questions using the magic words. The magic words are “When I am having severe symptoms….” How Roselyn Used the Magic Words
One more How to — How to Help KosAbility: Offer to Write
The KosA Admins could copy/paste like this every month but then you’d only read whatever we read. Let’s have more diversity and be exposed to what different people are reading that they think worth sharing. We want to hear your stories, small to big. How did you solve (or not) an issue related to life with your disability? Do you want to tell us about the illness or disability? What did you read that might be copied into a diary like this one? It doesn’t take much to begin our discussion.
KosAbility is a volunteer diarist community meeting the last Sunday of each month at 4pm PT/7pm ET. We embrace people living with disabilities, who love someone with a disability, or who want to know more about the issues. Our use of "disability" includes temporary as well as permanent health/medical conditions, and small, gnawing problems as well as major, life-threatening ones. Our use of "love someone" extends to cherished members of other species. Our discussions are open threads in the context of this community. Feel free to comment on the diary topic, ask questions of the diarist or generally to everyone, share something you've learned, tell bad jokes, post photos, or rage about your situation. If you are interested in contributing a diary, contact Besame, wilderness voice, Steven Park, or CathyM.
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