Wednesday, March 16, 2011

Taking the First Step to Social Security Disability

After nine years of being mostly incapacitated and unable to work more than an hour or two a day, I finally took the first step toward obtaining Social Security disability benefits today by submitting my application, through my lawyer's office.  I don't have very high hopes - in part because Delaware has one of the lowest rates of disability approval in the nation - but I thought I should give it a try to counter our mounting medical bills.

Why did I wait nine years to apply?  That's a good question with convoluted answers wrapped up in both practical and emotional reasons.  From a practical point of view, I always assumed mine would be a tough case to prove since I left my high-paid consulting job voluntarily two years before getting sick in order to take a few years off to spend more time with my family.  As it turns out, that's not actually a big issue, given the rules of the Social Security system.  I had also hoped that I would be able to make enough money writing to make up for at least some of my lost income.  Turns out that's harder than I thought, especially with so little time and energy to devote to a writing career and made even harder with the recent economic downturn.

Emotionally, I was used to being a very strong, independent, self-reliant person, so it's hard for me to admit that I need this kind of help.  I have to admit to also feeling some illogical guilt.  I am fortunate enough to have a spouse with a good job, a very nice home, and few needs unmet.  I hear stories of people with ME/CFS who are completely bedridden, without any family to help support them, who have been turned down for disability.  It makes me feel like what right do I have to ask for help?

But, I know that's an emotional response, not a rational one.  After all, I put money into the Social Security system for all these years.  It's supposed to be available to me if I am unable to earn enough on my own.  There's certainly no question that ME/CFS has disabled me.  Despite my euphoria yesterday over my 36-minute walk, I am still severely limited in what I can do.  In fact, I have been badly crashed since yesterday afternoon (maybe from the walk, maybe from other stuff, maybe from a change in meds on Monday), reminding me that my couch days are far from over.

So, I filled out the many, many forms, listing past jobs, current symptoms, doctors, medications, and blood tests.  At my lawyer's suggestion, I attached a narrative that explains how CFS affects me and what my daily life is like, along with my years' worth of daily symptom tracking and graphs (the lawyer was amazed by my meticulous record-keeping!)  And I'll see what happens.  The extra money would certainly help with our medical expenses, which just keep going up and up each year, maybe even allowing us to finally replace this 30-year old broken couch I'm lying on!  I've heard lots of horror stories about this process.  I don't suppose anyone out there has any success stories to share??


  1. I do. Mine went through the first time. I had been unable to work for two years and applied at my docs urging. I didnt want to for many of the same reasons you mentioned. But we were not able to make ends meet with just one income and our debts were mounting so fast it made our heads spin.

    It took about a year if I remember right, but it goes back to the date of your application. It has been a God send to us.

    Your documentation will be of great help I would think.

    Hope and pray yours goes through the first time for you!

    God bless,


  2. I have never even tried to get disability...Joel got it through the ELCA and is on permanent disability until age 66 when he can retire.
    Hope it all goes well for you.

  3. I never went for disability either. I was too sick. I asked the human resources person at the university if some people just took an early retirement instead of going for disability because they felt to sick to go through the process and she said "All the time."

    I'm glad you're applying. You qualify as far as I'm concerned and I think the meticulous documentation you have may just make the difference.

  4. I, too, have hesitated to try to get social security. For me, it's because I've been a stay at home mom for so long, I didn't think I'd qualify. It's been over 10 years since I last held a paying job and paid into the system. Am I wrong in my thinking?

    Dear Sue, once again, you are a pioneer and someone I look to who has "been there, done that." I hope it all works out well for you. Good luck.

  5. I'm in the middle of my application. I did all of the online forms last November and have to submit all of my documentation by the end of this month. I have most of it together. I added a detailed list of specialized education and a detailed job desciption. I just need to write a letter like yours. I'm also tempted to bind this thing like a book. I can't believe how thick the stack of doctors notes is.

    There are a couple of good things about SSD. You can appeal it. You can submit new documentation with each appeal. You can appeal up to the AJ court level.

    I have some links if you want them. Mass CFIDS has a great section on obtaining disability both private and SSD.

  6. Well, you know my battles with it - but for the first few years it was fine. It's a different system over here anyhow. I can relate to the emotional responses but remember, it is your entitlement, not a favour they are doing you. And, if at first you don't succeed, try try again.

  7. Thanks for all the support and encouragement, everyone (as always!!).

    @Toni - That's really a shame (though not unusual) that the process itself is too much for an ill person to get through. Private disability insurance wasn't an issue for me, since I was self-employed when I got sick.

    @Shelli - I think you may be right. I believe the guideline is that you need to have worked 5 years out of the past 10 years in order to apply. I almost waited too long.

    @Baffled - I have also heard that the CFIDS Association has an excellent packet of information available that improves your chances quite a bit.


  8. I was in the States when I got sick (and had paid in for 8 years). From what I gathered at the time, people my age with my diagnosis didn't get it so I didn't bother trying. I ended up back in Canada (where I didn't pay in) and on a form of welfare. I was still (after two years of being extremely ill) hesitent to apply. Once I applied I went through one apeal and a tribunal and was granted it. At that point I was only one step from was mighty close. I've heard the younger and better educated, the harder it is to get. I found good Dr. or Drs. documentation to be key. Best of luck.

  9. Jennie Spotila10:45 AM

    I was successful, but I had to get as far as the ALJ hearing to win. It's good you have an attorney. Expect to be denied and just keep appealing.

    SS will (at the ALJ level) have a vocational expert testify about the kind of work you can do in this economy given your qualifications. At my hearing, the expert said I could be a parking lot attendant (I graduated from an Ivy League law school). My attorney asked if I could do that job if I needed to lie down frequently throughout the day, and the expert had to admit I could not. I think that's one of the reasons I won.

  10. Actually, Sue, my Social Security story wasn't a nightmare at all. I was truly blessed. I was diagnosed and had my first check in my hand 18 months later.

    No complications at all.

    I have heard of a few other people who have had similar stories so I know I am not completley unique.

    The only thing I did was have my church friends pray over my application.

    So anything is possible.

    Good luck. I will keep your application process in my prayers. Who knows, maybe 2 times lucky!

  11. Anonymous3:37 PM

    My timing probably sucks telling you this now, but it feels important somehow.

    Last year I looked into getting Disability because after all, we deserve it.

    BUT, I was informed that I would have to LIE and HIDE that I exercise!

    Obviously I won't go there! Won't do such a thing.

    The law needs to change! Many of us can and need to exercise, but still need money, and we can't work.

    For some who can exercise, won't going on Disability give them an excuse not to? And keep them sicker?

    It was after I decided against applying for Disability that another door opened for me to have some income; my Mandalas By Judy business.

    I wish you only the best, and I will try harder to trust in your decisions for yourself, Sue. You know how much I want you and your boys to have what I have CFS-recovery-wise.

    I'm not afraid to speak my mind and try to reach out, even if it ruffles feathers.

    Do not feel like you have to respond to this comment. You have enough on your plate right now.

    Please be well.

    Love, Judy

  12. I have Multiple Sclerosis. I applied for disability for 5 years. I kept getting the run around. I was determined not to hire an attorney and give them 40% on my check.

    I got so frustrated that I called my senator. I wrote a 5 page history of what I went through to get approved. The very next morning I got a call from the senators office telling me I would be contacted that day by Social Security to process me.

    I got the call from social security that day telling me I was approved.

    You have to apply at least once before trying this, but is worth not paying an attorney.

    If a doctor says you are considered disabled, he/she writes a letter to social security for you. Everyone qualifies no matter your situation if you are disabled.

    And Judy, I exercise daily. You don't have to lie about anything. Social Security goes by what the doctor tells them. You just have to write out your daily experience with your disability.

  13. Sorry I didn't have time to respond earlier...

    Judy & Claudia -

    My lawyer recommended I do what Claudia has mentioned here and write a narrative to accompany my application. It ended up being 8 pages long! In that document, I explained exactly what my daily routine is like, including the fact that I can take short walks, but must rest before and after. I emphasized several aspects regarding how CFS affects me on a daily basis: how OI prevents me from being upright for long periods, the exercise intolerance of CFS and what types of activities often bring on a flare-up, and the unpredictable nature of the illness.

    My lawyer says my I have excellent documentation (9 years' worth of data showing what I was able to do each day) and that my only stumbling block will be that 3 of the 4 disability judges in DE have extremely low acceptance rates (for anyone, not just CFS) - the downside of living in such a small state!

    A friend of mine just submitted applications for her sons who both have CFS and she contacted her senator and representative at that time, when she applied, just to inform them she was starting the process. She'd also heard it was a good idea to involve them.

    Thanks for the tips!


  14. Anonymous10:27 AM

    I also did not apply for disability for about 11 after I became disabled. I had a horrific car accident in 1996 and after 4 major surgeries in a year and I struggled and went back to work ( against my surgeon and my family doctor's advice). I worked for 11 years more before I decided I just cannot go any longer and in 2007 I applied for Social Security Disability. Here it is 2011 and I have been turned down 3 times (one time by the judge). My doctor has wrote letters on my behalf and the Social Security sent me to their doctors and they agree I have disabilities. Though, they still think I can be a ticket seller or small product assembler. Since my ability to stand is very limited, the judge stated I would need a job that has a 'sit or stand option'. My attorney said there is no such classification of work that has that option. I have appealed the judges decision and I am awaiting a decision from the Appeals Council. I only have till December 31 2012 to get approved for my disability or I will have lost the ability to draw social security because my time limit would have expired. I can get SSI but not SSDI. I wish you luck in getting your disability!