Thursday, January 31, 2013

Approved for Social Security Disability

People keep asking me whether I have heard back yet, since my final hearing on Social Security disability back in December.

Yes, my letter came in the mail a couple of weeks ago: "Fully Favorable Decision."

It is a bittersweet success, though, which is probably why I haven't said anything. I have very mixed feelings about it. I was approved for just 3 years' back benefits with no on-going benefits. It's a long story, but the bottom line is that it came down to making a choice between an almost-certain "no" or a good possibility of a "yes." My husband and I agreed with my lawyer that something would be far better than nothing.

And that strategy worked - I was approved. But it still stings that I wasn't able to ask for or get what I really deserve - back benefits for 11 years plus on-going benefits.

So, yes, I was approved - yay.  Now we wait another 30 days to find out how much, then another 30 days to get a check. We have no idea how they'll calculate this, since I made a good salary as a consultant 13 years ago, before I got sick, and very meager earnings since then freelance writing.

I do highly recommend hiring a lawyer to take you through the entire process. I doubt very much I would have won without him; his advice was very helpful every step of the way and his office handled a LOT of the paperwork, faxing, etc.. The way it works is that you don't pay anything unless you get approved; then the lawyer gets a small percentage of your benefits.


  1. Dear Sue...that is bittersweet...can't understand - which i know there is no answer how they can approve "3 years" and not continue since there is no cure...I am happy and sad for you...Heather
    Don't know if you got my email..but please consider doing this blog a thin...
    thank you heather

  2. Good news, I guess. Well it's what you applied for so that's good. I've been wondering how the decision came out. Fingers crossed that the check is reasonable.

  3. Doesn't seem to matter which way the decision goes: 'they' always come out on top. Still, at least there is some recognition that you *were* ill..although, if there are no ongoing benefits recommended, perhaps they are inferring that you have made some sort of recovery and not noticed !

    Bittersweet indeed

  4. Oh, and I forgot to mention...

    being approved for ANYthing means I can reapply in the future. If I had been turned down completely, I could never re-apply again in my life.

    Just another factor that helped make up our minds.

  5. POTSNJ11:10 AM

    Hi I've been following your blog the past few weeks and wondered too how it all turned out. Congratulations (sort of?). I have a question, as I am in the process of appealing my reconsideration denial. I became sick with CFS in 1997 and in 2001 couldn't carry on and had to stop working. I wasn't officially diagnosed with POTS and CFS until 2007, after my period of eligibility ended. Yup, ten years! I was told I was too late to apply. I found out in 2012 this wasn't true - that if I could prove I was disabled 2001-2006 and today, I may still be eligible. No easy task to prove this. I was told by social security and my attorney that you can only get one year of back pay. Is that inaccurate? - if you don't mind me asking, how did you get them to even consider 11 years and how did you get 3? I'm more concerned with getting ongoing benefits, but just curious how you ended up with this decision.

    1. I was right on the edge of eligibility when I finally applied, too. I had left work two years BEFORE I got sick (planning a short couple of years off to spend more time with my kids), then waited 8 years to apply because I have been trying to earn money writing. So, I almost missed the cut-off by a few weeks!!

      I'm no expert - I just listened to what my lawyer said! I believe the rule is that you have to apply within 10 years of when you last worked (and contributed to SS).

      You are right - you are in a tricky position with the diagnosis. I was, too. Dr. Bell told me 10 years ago that I had OI, based on my symptoms plus the fact that over 97% of those with ME/CFS have some form of it. But I noticed in the 2nd rejection from SS that the doctor who reviewed my case said, "Self-reports OI but no medical evidence." So, just a few months ago, I finally had an official OI standing test done in my doctor's office and submitted those results (that showed POTS) for my finally hearing. I used the OI results as the basis for showing my disability, since they proved I can not even sit up for 8 hours a day (and OI is measurable, as opposed to the rest of CFS). Sure enough, the judge asked why I was asking for back benefits when I'd only recently been tested for OI. I explained that I'd had it all along, that it is a documented part of ME/CFS based on many research studies, and that Dr. Bell's original diagnosis letter DID mention it, even though he hadn't actually run the test (he said it would make me too sick to get my son and I home!). And the judge accepted that explanation.

      So, it seems to me that your challenge is medical evidence to prove you were disabled, even if you'd been misdiagnosed or undiagnosed for so long.

      I highly recommend going to see a lawyer - you only pay them if you win, a small percentage of your award. I never could have done this on my own.

      Does the NJ in your username refer to New Jersey? I am just across the river in Delaware. If you are in central or southern NJ, near DE, feel free to e-mail me at jacksonde at, and I'll be glad to share the name and contact info of my lawyer. I don't know for sure whether he works in NJ, but it is quite possible since DE is such a small state.

      Oh, and you can definitely get more than 1 year of back pay because I was just awarded 3....but, of course, you have to meet the timing requirements wrt when you last worked, when you apply, etc.

      Good luck!

  6. Congrats!!! It took me 5 years and 2 attorneys and a team of my doctors to get mine. It was a horrendous, long struggle that I don't think I could have gotten through without my husband's support. It is bittersweet, I can relate to that very much. You will receive paperwork indicating how they calculate your monthly amount (based on total years working/paying into social security which gives you 'credits') and what your retroactive amount due will be (less any applicable legal fees and if any SSI was paid out). Generally the retroactive amount goes back only to the date you originally applied for SSD or to a later date the date the judge approves, but your original date is usually the cutoff.

  7. POTSNJ7:57 PM

    Thanks for your response, Sue. Yes, I'm in New Jersey and do have an attorney. Thankfully, I have tons of records dating back to 1998 which I think all put together tell the story. I only hope a judge agrees. I also thought (as Jo said) that you could only get back money for one year prior to your application date. Your attorney must have negotiated for more and won. Good for you! Hopefully you'll be able to re-apply in the future and get your monthly benefits as well. Looking forward to reading more blog postings - love your writing!

  8. Agatha7:28 PM

    Congratulations, Sue!
    I am pretty close to the 10-year-limit, but have yet to apply and am not sure I can face it. I would like to know whether it's permitted to receive disability and still earn money from your freelancing? Is it all-or-nothing?
    There's such an irony in all this. It takes so long to get diagnosed, and then it often takes years before you realize you're likely never going to be well. In addition, people often have years of lowered earnings before they quit work entirely. So, the more optimistic you have been, and the more you've kept trying to work, the less likely you are to get full benefits! We should all tell every newly diagnosed person to document everything and apply for disability right away (but keep on hoping for a healthier future)!
    By the way, I've been reading your blog for the past couple of weeks--I've read most of the past two years' posts. It's absolutely great! Thank you so much for telling your story.

    1. Agatha -

      Great question - yes, you can still earn some money. The limit is $1000 per month or $12,000 per year.

      Thanks for the kind words about my blog - so glad it has been helpful to you.


  9. Congratulations! SSD application process is such a hassle.

    BTW, SSA also has a back to work program where you can try working to see if it affects your health without loosing your benefits.

  10. Interesting. I am unable to earn any $ at all as I am classified as 100% disabled, if I do, I will lose my benefits. I was also told I cannot attend school ft or pt or I will lose my benefits (because if I can do that with any regularity, then I can work - I can't so it's not an issue for me anyhow). I realize there must be different state laws also applicable to all of this as well, as with not being able to get paid prior to my original application date, but I'm surprised things could vary so much!

    1. You might want to double-check on that, Jo - my understanding was that the $1000 per month limit is based on federal SS law.

  11. Again, I can't work anyhow so it doesn't really matter lol!

  12. Good for you, Sue.

  13. It is true what you said about hiring a lawyer to get you through the whole process. They know the ways around it and would definitely give you the best advice possible. I'm genuinely happy that your application was finally approved. The next steps will be easier from here on, especially if you have your trusted lawyer beside you. Best of luck!
    Erminia Cavins