The other day I wrote about the inanity of the disability insurance system. Today I finally got in touch with my doctor and she read off the questions they sent her.
First, I love my doctor. When they called her, she refused to answer their questions on the phone and insisted that the questions be sent in written form. Lovely. And she’s going to send me a copy in advance so my lawyer and review it before she sends it in. Let’s just hope it helps me.
So anyway, she read the questions. And I didn’t like them. There were some along the lines of, if Prednisone and Plaquenil were helping me, why did I go off of them. Um, HELLO?!?!?!? These are not drugs to stay on long-term if you can help it! Why on earth would they suggest otherwise? And of course they asked why I didn’t try other disease-modifying drugs. I wonder if they mean the drug that’s in a class I’m allergic to, the one that causes permanent infertility, or the chemo drug? Because those are the only options I haven’t tried. Anyway, these questions are all focusing on treating the pain, and if you’ve been reading this blog for any length of time, you know that pain is not what’s keeping me from working these days. It’s the fatigue that’s stopping me from working, dating, spending more time with friends and family, getting out of the house many days… you know, having a LIFE!
Of course, the problem is that these insurance folks don’t see a person in those medical records. They see symptoms that could cause them to have to pay out lots of money, and they don’t want that. So they’re looking for a way to not pay the money. Even though if I had the money, I’d probably get better faster because I’d have more stable health insurance and more money to pay for treatments that aren’t covered by insurance, not to mention less stress and more stability in my life. But no, they’d rather try to avoid paying at all, which just delays my treatments, which means that if I do eventually win, I’ll be on the insurance for even longer. I’d rather get the money now so I can get better and then go back to work. And then they wouldn’t have to pay me at all.
Maybe I should buy a lottery ticket instead. Because, yeah, that always works.
I have to find a way to get healthy. I have to get healthy, start socializing again, go back to work, and then figure out how to fix this ridiculous, unfair, broken system that is completely stacked against the patient. I need to figure out how to lobby legislators or whatever to provide some fairness to this joke of a system.
It’s just not ok.
I used to end every post by asking readers to share it. I stopped doing that because I don’t think it helped and I’m less concerned by the quantity of readers than by the quality of readers (as in, getting people who are in some way helped or entertained by my writing.) But this time, I’m asking you to please share this and any of the other insurance-related posts. It’s so important to start opening people’s eyes to this. Everyone is so focused on health insurance. Yes, that’s important, but disability insurance is important too. And what’s the point of having it if they won’t provide the service that you’re paying for? People need to start realizing this, so that we’ll have more support as we work to improve the system. So please consider sharing this on Facebook, Twitter, Reddit, or whereever else you are. Or even by old-fashioned email (does that make me sound old?) For all but the last, just use the little buttons below this post. It’s a small way to help me work towards one day changing the system.
I can hardly wait to get started.
Chronic Rants 
The system sucks, that’s for sure. It’s a mess. I got disability in 2011. I actually had way more documentation than I needed. I made special appointments with doctors to watch them fill out the questionnaire from the tacky, advertised-on-TV law firm I used. They don’t care if you prove that you’re suffering. They care that you prove you’re incapable of working. That’s why psych cases get it the first round while chronic pain people like us have to try again and again. I thought your state was better than most. Was I wrong?
I have no idea how my state ranks. And I have no idea if it might have been better for me with different documentation. I do know, though, that quite a few friends who live here and have similar health issues went through the same hellish process (or worse) that I did.
It was pretty hellish for me too. Once you get it you can relax. You WILL get it, I know you will! I got it the second time, but some people need three or four tries. Your age works against you … anything under 50 can be a problem. They just make people jump through hoops (although really we can just crawl through hoops).
What I found especially demoralizing about applying for disability was the requirement that I prove I am a sickly, decrepit, dysfunctional mess, when all I ever wanted was to be a competent adult with a good job, a few advanced degrees, and maybe an adopted kid (never wanted to pass my crappy genes along).
That’s exactly how I felt, too. I was trying so hard to improve my health, and to not constantly focus on how crappy I felt, and this process was doing nothing but forcing me to not only think about the worst aspects, but to then convince someone else that they were true. Like you said, it was incredibly demoralizing.
By “your state” I meant where you live, not your personal state of being. I’m rambling, it’s 5 a.m. and I have insomnia. Aaaargh. Disability is ridiculous. There is one thing worse though: Workers’ Compensation. Evil.