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Ask HN: I'm disabled and out of money. Now what?

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Re: Ask HN: I'm disabled and out of money. Now what?

#211
I have been where you are. It's terrible and the United States is a terrible place to have these kinds of problems.

I have a few thoughts.

1. Focus on finances. You say you're behind on your car payments. With the upside-down state of the current car market, there's an outside chance you could sell it at a profit, maybe clear 10k. (I have no idea what kind of car you have, but 10k > sales price is not unusual right now.) Maybe you could sell it, pay off the note, and have enough left to buy a very basic used car?

2. SSDI. A disability law firm can be helpful. I used them for LTD but they exist for SSDI as well. For LTD they work on a commission of your back pay once you are approved. YMMV.

3. Part-time work - at this point your focus needs to be on survival. What can you do, that's relatively in demand? Start there, worry about perfection in your career path another time. P/T flexible jobs for disabled people -- that's a need that's been unmet for years, but there are some developments in it. Try https://www.wearecapable.org// .

4. Keep up with the therapy. Also investigate nutritional deficiencies, thyroid imbalances, etc. Fixing them won't "fix" your problems, but it'll give you more physical and mental strength to deal with them. For more info see my short essay: https://radiosof.com/2019/09/22/some-interesting-tools-for-d.... The embedded links also link to some other essays on genetic and nutritional components to depression. Some of these can also affect inflammatory response as well. So finding out if you're bad at methylation and supplementing with B-12 shots and methylfolate (for example) could also potentially reduce some pain levels somewhat. Which would then allow you to think and strategize more clearly.

5. Depending on your issues, it's great to have really smart, genius-level doctors on your side. The Center for Complex Diseases in Mountain View is one such a place. I'm not sure chronic pain is their specialty, but perhaps you can call them and ask. I think Stanford has a pain clinic as well?

You're used to the YC world, where they talk about "10x" coders. Well, there are "10x" doctors. Once you get into the world of invisible hard-to-treat illnesses and you're trying to qualify for disability, you NEED a 10x doctor. First, b/c they might help you improve. And second, because they see people like you all day and they are going to be better at helping you qualify for disability than a regular primary care doctor.

I would recommend calling the Center for Complex Diseases, and asking if they cover patients like you, and if not, who they recommend. Then put the very expensive appointments on your credit card or borrow money, do what you have to. They are an investment in your ability to qualify for SSDI. A few thousands now may guarantee $18k/ year for the foreseeable future.

6. This website is the Bible for people navigating disability applications: https://howtogeton.wordpress.com/

Good Luck!

Re: Ask HN: I'm disabled and out of money. Now what?

#212

I went through a very similar thing with ME/CFS and hEDS (which has a chronic pain component). Before I even knew what was I knew that I was on the decline. I was doing ok at work but my ability to maintain a working pace kept diminishing. I went from full time to part time to less than part time to the occasional contracting. I ended up having to do a bit of a Hail Mary to try to save myself. I took a bunch of stimu…

Your story is very familiar to me....I worked for years in a failing body, trying to make enough money to survive.

It sounds like you've found treatments that help you, but if not the Center for Complex Diseases is great with both ME/CFS and hEDS. If you have spine issues due to hEDS there are some PT's in the Bay Area that specialize in craniocervical instability and related issues. Just FYI.

Re: Ask HN: I'm disabled and out of money. Now what?

#213

Earlier quoted context omitted.

Everybody should read Sarno's book. It's a short read and even if it doesn't help your back pain it will probably alleviate something else. My partner and I both had pain that disappeared from reading Sarno. Back and wrist pain are gone.

This might sound snarky I apologize. How do you know that you pain disappeared from reading a book, when it could have been random coincidence? Or to phrase it the other way: I have had some or the other sort of pain in my life, and these pains did, rather randomly leave. Would I have read a book or done some random ritual at this point in time, I might now misattribute the relief to the random ritual.

> How do you know that you pain disappeared from reading a book

I can't know for sure. Though there is this:

https://www.nih.gov/news-events/nih-research-matters/retrain...

> “For a long time, we have thought that chronic pain is due primarily to problems in the body, and most treatments to date have targeted that,” Ashar says. “This treatment is based on the premise that the brain can generate pain in the absence of injury or after an injury has healed, and that people can unlearn that pain. Our study shows it works.”

My back was feeling worse and worse until I read the book though. My partner reported the same thing. It could be a coincidence but the book was short, contained a few good lessons, and costs me nothing to recall the information in the future.

Re: Ask HN: I'm disabled and out of money. Now what?

#214
Will probably get downvoted here, but read a self-help book.

Awaken the Giant Within by Tony Robbins is one of the better ones based on the various areas of your life. (Raising Standards, Limiting Beliefs, Change your Strategy)

If you don't read this book, there's plenty of others regarding how our mental state can do more damage than good. Some are even associated with chronic physical pain such as back pain or migraines.

For as little as $10 or a trip to the local library (or online version), you can potentially change your life by reading a book with something foreign to you that you try and it suddenly works.

Re: Ask HN: I'm disabled and out of money. Now what?

#215

I'm not sure what the cause of your chronic pain is, but I would highly recommend reading John Sarno's "The Mindbody Prescription." I've dealt with chronic pain for years and it's the only thing that's had any effect. Please, please , don't write it off until you've read the book. Note that Sarno's work focuses on back pain, but it applies to all types of chronic pain (including migraines, which he discusses in the b…

Personally I think Sarno is BS. He's telling people what they want to hear and covering up for the failures of of our medical system.

He basically says that your pain is coming from stress from psychological issues and what you need to do is therapy and Journaling.

I believed this nonsense in regards to my own back pain for a long time. Ironically my pain of 5 years started to subside as I gave up these beliefs although I don't think that was causal.

I had a physical injury to my neck muscles. It turned out what I needed was years of rest and pt to that muscle system. No amount of Journaling is going to fix real injuries

Re: Ask HN: I'm disabled and out of money. Now what?

#216
post #89

I’m sorry you live in one of the worst countries in the world to be disabled in. While this can be challenging everywhere, the US is especially bad at providing adequate support, both financially and otherwise. What might help you is looking for a job with part time responsibilities and part time wages and investing full-time into that job if you need to to keep up. If this is viable for a tech role you’re likely to…

> I’m sorry you live in one of the worst countries in the world to be disabled in.

At least in the USA, the ADA ensures that many places are built to be wheelchair-accessible; bathrooms in public places have accommodations, grocery stores have ramps, stairs always have an alternative, etc

I'm pretty sure in most countries in the world, mobility would be far lower for the disabled.

Re: Ask HN: I'm disabled and out of money. Now what?

#217

Earlier quoted context omitted.

I am not an expert on disability insurance, so I recommend everyone do their own research and speak to a disability insurance independent broker to get tailored advice, but if you have a "true own occupation" and "partial disability" coverage, then I think you would be covered, e.g. if you are a programmer that can no longer code more than half time due to carpal tunnel, I would think you could collect 50% disability…

Right, not an expert either. But you moved the goalpost a little. Carpal tunnel is a medical condition. You can take an xray and see inflamation and rule it. You can't really do that with pain or brainfog. There is no test "how real is this persons pain".

Again, not an expert, but I would guess that in a “good” comprehensive disability insurance policy, chronic pain or brain fog is not an excluded condition, per se. It may be much harder to get the insurance company to accept your claim, but that is an issue of proof, not contractual exclusion. I would also guess that a good attorney could help make your claim succeed, even if initially denied, if it can be shown through the totality of the circumstances, e.g. a long history of doctors appointments, pain pills, attempts and inability to keep working due to the pain, a decrease in normal life activities (e.g. you used to be an avid sportsman and have clearly ceased all those activities), etc. If you claim your pain is horrible but they catch you skiing on vacation in Italy, even if somehow that was during a lull in your pain, that’s probably going to not help your claim.

Re: Ask HN: I'm disabled and out of money. Now what?

#218
post #188

Earlier quoted context omitted.

Since we're on this topic: any notably good insurance companies that folks would recommend if we're talking privately purchased disability insurance?

Mine is through Principal, because it covers mental and nervous system issues too. It was the only one that did when I was looking. I'd also like to add that if you end up collecting, DI payments are TAX FREE. The second I found out this existed I got a policy asap lol

DI payments are tax free if you pay the premiums out of pocket. If the employer pays your premium through a group policy, the payments are taxable.

At least that’s my understanding, anyone reading should confirm with a DI broker.

Re: Ask HN: I'm disabled and out of money. Now what?

#219
post #199
post #191

Earlier quoted context omitted.

ps: I don't know if this applies to you, but since there is overlap between us (my condition is like a permanent flu: brain fog, general body aches, slow at everything, oversensitive to stimuli like noises or movement): Learning pacing (managing activity levels, following a sustainable routine) and general routines for managing life have been very important for me to get to a stable, somewhat predictable state. There…

I would be very interested in that link.

http://cfsselfhelp.org

My doctor (Lucinda Bateman, a CFS research coordinator kind of person and founder of a center, BHC aka https://batemanhornecenter.org which has other materials including a CFS self-care brochure kind of thing, and ed. materials for doctors--they provide education that counts in professional training hours I gather, etc--not a cure so far though) recommended the site once. I have very many notes & other URLs, not all of known quality. More ideas than one can try reasonably, in a lifetime, I guess, so in large part I am waiting for COVID-19 ("long covid") research to shed more light on CFS, and answers to my prayers, and I expect to get better.

My efforts at routines (work vs. rest, doing things one at a time, per plan and in order), mental habits etc have expanded greatly beyond that. There is some stuff at my web site (in profile) which has my email in the footer if you ever want to discuss details, ideas, or questions further. It's still hard but I feel peaceful and pointed in the right direction. Best to you.

Re: Ask HN: I'm disabled and out of money. Now what?

#220
post #215

I'm not sure what the cause of your chronic pain is, but I would highly recommend reading John Sarno's "The Mindbody Prescription." I've dealt with chronic pain for years and it's the only thing that's had any effect. Please, please , don't write it off until you've read the book. Note that Sarno's work focuses on back pain, but it applies to all types of chronic pain (including migraines, which he discusses in the b…

Personally I think Sarno is BS. He's telling people what they want to hear and covering up for the failures of of our medical system. He basically says that your pain is coming from stress from psychological issues and what you need to do is therapy and Journaling. I believed this nonsense in regards to my own back pain for a long time. Ironically my pain of 5 years started to subside as I gave up these beliefs altho…

My experience is the exact opposite of yours. I was told for 12 years my back pain was caused by bulging discs, having a spine that has a reduced natural curve and also caused by poor posture. I read Sarno's book and I have been pain free since November last year. I have never gone longer than 2 weeks without severe sciatic or SI joint pain.

Please don't dismiss Sarno's work as BS. It may have not been the right fit for you, but it is for countless other people. Sarno's work is aimed at exactly people who don't have a real biomechanical issue like yourself. It's not a one size fits all, nor is Physiotherapy or surgery.

Also in general, Sarno doesn't reccomend journaling to everyone. A simple mindset change works for most people. Worked for me.

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