From the first day I decided to leave my job almost 3 years ago, my top priority was to get my health back on track. Unfortunately, various forms of insurance have worked to, intentionally or not, make that as difficult as possible.
My health is my priority, but money is still necessary. I need it to pay for any healthcare that insurance (when I have it) 
doesn’t cover, and also to pay for little “luxuries” like rent, electricity, and food. When I left my job I had short term disability insurance. I filled out one short form and had benefits. It was nothing short of miraculous! Unfortunately, the miracles ended there.
If you’ve been following this blog for a while, you know the basics: I was denied long term disability insurance (LTD,) went through a long, frustrating, stressful, difficult, expensive appeal with a lawyer, and was finally approved. What you don’t know is that when they did their let’s-see-if-she’s-still-disabled review of my medical records, they denied me again. They said I was well enough to work. Of course.
Thanks to the LTD fiasco, I had my employer-provided health insurance, then nothing, then the private insurance again (they were trying to mollify me after a big error on their part), then nothing, then MassHealth (our state medicaid), then private insurance, then nothing, and now MassHealth again. And yes, that’s all been in the last 2.5 years. And I think I left out a transition. It’s been hard to keep track, but I have a record of it someplace….
If you’ve been following this blog for a while, you know that I applied for social security disability insurance (SSDI), was denied, appealed, was denied again, appealed again, and got a hearing before a judge. What you don’t know is that…. I WON!!!! Yippee!!!!!!!!!!!!!
I was certain I’d win that last round of LTD, and then I lost. I was certain I’d lose the last round of SSDI, and I won. So what have we learned from this? We’ve learned that my instinct for insurance appeal outcomes sucks. We’ve also learned that the system is horrible.
I told a bunch of friends about this, and I mentioned that I’ll have Medicare (the federally-run program) for health insurance now, in addition to MassHealth. A couple of friends who’ve been through this rushed to remind me that there’s a waiting period for Medicare. Yes, if you’re so sick that you need SSDI, they make you wait another year and a half before you get health insurance. Brilliant system, eh? But the ridiculous part is that I’m long past the waiting period! My benefits are retroactive, and I was eligible for Medicare 4 months ago!
Of course, nothing is ever easy with any of this bullshit. So even though I got the judge’s decision several weeks ago, I still don’t have benefits. I was going to wait to write this post until after I knew more, but I found out yesterday that my social security office has 60 days from the date of the judge’s ruling to process my file. It seems silly to wait another month and a half to write this, so here I am, typing about the benefits I’ve been told I’m owed, but which I don’t have. I don’t have the back payments the government owes me. My lawyer does not have her fee. I do not have Medicare. I can not use the ruling to get onto the disability-related portion of MassHealth or to get any of the other random benefits I would get with it, like a reduced-fare subway pass. Worst of all, I can not see new doctors (and I need several) under a stable, established health insurance. This probably won’t be an issue, but after everything I’ve been through, it makes me nervous.
Too much stress is bad for even the healthiest person. It’s much worse if you have an autoimmune disease, and I have several. It’s even worse if you have adrenal insufficiency, which I have. So the stress has literally been holding back my recovery. Last year, one of my medical practitioners told me that she didn’t expect me to make much more progress until the LTD and SSDI issues were resolved, because my high stress levels would impede any treatment. She agreed I was handling the situation as well as could be expected, but anyone going through it would have a lot of stress, and therefore a lot of stress hormones.
Then consider the number of hours I have put into this. I tried to keep track at one point, but it was too depressing to see. I was constantly submitting requests for medical records, following up, and reviewing the records. I had to stay on top of doctors who didn’t fill out forms completely or on time. I ferried paperwork to and from my lawyer. There was so much crap to deal with. Some weeks I didn’t do any, but others it was like a part-time job. But unlike a job, the “payment” would be either nothing, or maybe the money that I rightly deserved.
And don’t forget the financial cost. Yes, I spent money on a lawyer. I also had the uncertainty of income. A friend with chronic illnesses sees a therapist who isn’t covered by insurance. I can’t do that. She gets regular massages. My doctor and physical therapist want me to do that, but I can’t afford it. Maybe I couldn’t have done all of that anyway, but I could have made long-term decisions if I’d known I’d get the benefits I qualified for. I have worried about money more in the last 2 years than I ever have before in my life.
And now? Now it isn’t perfect. Now I’m still waiting for everything. Now I know that my monthly SSDI payments aren’t nearly enough. If I can’t return to work at least part time within 2 years (when the SSDI pack payments and my savings run out), then I will have to move in with my parents.
But now I also have less stress. I have more time. I can finally do what I’ve wanted to do for the last 2.75 years: I can make my health my #1 priority.
Please use the comments to tell your own SSDI stories. Vent your frustrations. Share your experiences. For those of us who’ve been through this, we might as well lend an ear to one another. Or write any other comments you’d like.
Chronic Rants 
I believe in Massachusetts, once you get SSI/SSDI, you automatically get MassHealth for the time before Medicare kicks in. Once you do get Medicare, you keep MassHealth as secondary insurance, and that keeps you from having to pay for the percentage that Medicare doesn’t cover. That’s how it worked for me, anyway. But watch out–MassHealth likes to drop people’s coverage for no apparent reason without telling them, and then when you try to get in touch with them to see what’s going on, they’ll tell you it’s the fault of every other office on earth but theirs. Seriously, they told me to call the food stamps office, and I didn’t even get food stamps then! It took two months to straighten it out, and then they did it again less than a year later. Despite the trouble, it’s a lot better than it was when I lived in Alabama, couldn’t work, and couldn’t get Medicaid because their income cap is insanely low.
Thanks for the warning about MassHealth! I’ll be sure to keep extra good records about who I talk to and what they say, just in case. I’m sorry to hear you’ve had to deal with so much bureaucratic crap.
Congrats! Yay! I got SSDI on the second try by using the esteemed law firm of Binder and Binder, known for their classy advertisements during daytime talk shows that feature questions about the true identities of various baby daddies. Binder was actually pretty good. I schlepped their forms (they had their own) around to various specialists I was seeing, making appointments just to make sure the doctor filled out the form. I was in so much pain I could barely move at the time, and I had to force myself to go to a gajillion appointments. It is EXACTLY like a part-time job–so true. Turns out I went overboard …the lawyer told me I had the best documentation she had seen all month. I won, but my friend won on the first try (without a lawyer) just for having OCD! In my state it is so much easier to get SSDI for psych issues. Thanks for the reminder about the reduced-fare public transit–we must have something like that here. Hope your Medicare kicks in soon! Bleh. Well, at least you got it. I have a feeling you will be able to work enough to avoid having to move in with your parents.
On the one hand, I liked my lawyer because I eventually won. On the other hand, I wish it had been settled sooner and more simply. She didn’t have my doctors fill out any particular forms until we got to the hearing, and I wonder if maybe she’d given them to me sooner, we could have skipped that hearing. Oh well, there’s nothing I can do about it now. I’m glad you got your case settled sooner, though!
I have chronic migraines and actually, unbelievably, was approved for Disability immediately. But I can’t get SSD because my last job was for the government and I was paying into OPERS (Ohio) which I pulled when I couldn’t work anymore; my retail jobs were too long ago to count. After tons of extra work, assuming I would get some sort of SSI, nope! Just found out I’m not eligible for SSI because my husband MAKES TOO MUCH ($2k net per month for family of 4). Next up: food stamps.
I’m glad you finally got a victory!
That’s terrible! The system is so ridiculous. I’m sorry you’ve been put through that, ladymigraine.
Thanks. Just having the Disability status helps though, and I feel grateful my dude has a job he loves. We’ll make it somehow! But damn, all that freaking paperwork…
What do you mean by “Disability status” if you don’t have SSI or SSDI?
Because I have been approved for both, I just don’t receive benefits. But I am still “disabled.” Helps with taxes, food stamps, even things like getting pain meds.
You’re approved but you don’t get benefits. Right. Just when I thought I’d seen the worst of this system, someone always comes along to show something even worse….
But yeah. I totally agree with you.
Actually I did get some SSI back pay from when J was unemployed, and I am eligible for Medicare through SSD in 2015. But right now we get Ohio expanded Medicaid which is better.
I am so glad you finally got approved. I’ve been lurking here, watching your story unfold.
I think that SSA should be held accountable to a reasonable timeline for reviews and appeals. 60-90 days between each should be more than enough. To make people wait years is unconscionable.
When I applied I was depressed bc I’d just lost a good paying job and didn’t really know what was wrong with me (I deserved to be fired, my brain just wasn’t lighting up!). I already had several conditions so I just filled out the application for SSDI and dropped it in the mail.
Then I applied for UI, which I got, and started looking for a job.
I got approved for SSDI immediately, for neuropathy. Of all my conditions that was the least limiting. I kept looking for work.
A month later I was in the ER, gasping for breath. Turns out my brain was fried from hypoxia and I had pulmonary hypertension.
So karma was on my side.
Still think others with solid medical evidence shouldn’t have to fight so hard
I’m glad you had coverage when you needed it! It’s odd to consider their standards, though. One person with neuropathy gets approved right away, while another doesn’t, even though both have been diagnosed by doctors. One person with fibromyalgia gets approved right away, while another doesn’t. Why? It makes no sense.
Thanks for lurking, StuckInTexas! I hope you’ll comment again when the mood strikes 🙂
StuckInTexas, sorry about your hypoxia and pulmonary hypertension! Interesting that you got SSDI for the neuropathy. That would never happen in NY. I know–I have several different kinds of neuropathy (RSI, lumbar spine, cervical spine, Lyme-related, etc.). But my friend’s uncle got SSDI for cocaine addiction! I don’t get what is and isn’t considered a disability.
I think you need to clarify, Miss D. You understand perfectly what is and what isn’t a disability. It’s the case reviewers who don’t understand, and you don’t understand *them*!
I’m glad you Won!, It takes two years to get Medicare after you are awarded social security disability, They should use your starting date as the date you very first filed for disability, at least I hope they do for you.
So glad to hear that they finally approved you! YIPPEEE! That’s awesome.
Hello chronicrants,
Great post you have shared. It’ll be really useful for those who don’t know about SSI and disability benefits. I would really want to say thanks to you.
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