Miss Understood: Denied Disability

Miss Understood: Denied Disability

In May of 2013 I was placed on permanent disability by my rheumatologist at USC. He informed me that my best bet would be to look into getting a lawyer to help with the paperwork once I received my first denial letter.

At the time I didn’t know why he was telling me I would get denied if he was the one placing me on disability when all I wanted was to work.

I had no idea that a year would pass and I would still be going through the appeal process, which feels like more of a waiting game than anything else.

bigstock-Filling-Up-Legal-Court-Forms-8174890I followed my doctors advice and retained a great lawyer who specializes in disability cases. Luckily for me he doesn’t get paid until I get approved and Social Security pays me for the months I’ve been waiting.

Not only do I not receive any form of monetary relief, but I was also denied Medi-Cal (Medicaid in California) because of my age. For me, medical coverage is much more valuable than whatever money I’ll be receiving, because my treatment is extremely expensive even with the help of my private insurance.

It’s a very frustrating process, which I believe takes longer than necessary. They have my medical records, hospitalization dates and diagnosis, but for whatever reason it isn’t enough. I’m not sure how they rate each application and I’m fully aware of all the fraud claims they must receive.

I honestly believe that I was denied due to age. They think I’m too young to be as sick as I claim to be.

It makes me feel like I have to prove that I’m not just being lazy or trying to take advantage of the system. As if I don’t go through enough on a daily basis, I now have to plead my case to strangers who don’t know me or the true side effects of my conditions and medications.

It’s easy for someone to read what lupus, rheumatoid arthritis, fibromyalgia, migraines, Sjogren’s disease and vasculitis are. But to live with them each and every day and have it affect your life in such a painful way is different.

The road to getting approved is long and I have no idea when it will end. But I refuse to give up just because I’m being starved financially. So many people go back to work against doctors orders because they can’t afford to wait years for their disability to be approved. It’s unfair and unjust.

I’ve felt like throwing in the towel and quitting, but if I do I’ll only be hurting myself and causing more harm to my body. So I will continue to wait, pray, and hope for that letter in the mail with my trial date because I’m not giving up until I get the benefits I need.

Arlene Grau

Arlene Grau

Arlene Grau lives in southern California. She suffers from rheumatoid arthritis, fibromyalgia, lupus, migraine, vasculitis, and Sjogren’s disease.

The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that!  It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.

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One other thing…there is state disability which your doctor can place you on for up to year. At least that is the law here in Calif. Than there is the federal disability, SSDI. One that you see taken out of your paycheck unless you work for state that has it’s own system for disability.
So your doctor can sign you off for even 6 months now to give you rest and see if i helps. That might be all you need.
Mine would do this when i got very ill and hospitalization was where i was headed…i hate hospitals and only go in if life threatening so he sign me off to rest. it helped me to continue working many more years.


I agree with Diane about most cases are denied but not all. I have friend who got it on his first try without a lawyer!
It does help to be older according to the man i hired to represent me for my SSDI. He worked for them for many years so he knows their procedures, etc.
He also won my case in less than 4 months since he knew how to win by just finding a case like mine…set precedent so they cannot turn you down. Very easy just time consuming.
I also encourage you to consider trying to keep working. Instead have your doctor write a letter about your limitations to make your work easier…such as no overtime. My doctor did this for me and i had no idea that my company had to follow what he wrote.
also is helpful if you have boss that gives you bad time for being sick…they can tell them to knock it off if they don’t legally they can be in for not following doctors orders.
But as my 1st rheum told me in my 20’s to try and keep working for as long as i could. It helps with your self esteem in so many ways…he was so right about it helping. Also gets you to try and make it through the day where if you were not working you might just lay in bed which is worse thing one can do unless extremely sick.
So talk to your doctors about what they might be able to do to help you keep working. Plus, many large health insurance groups like Kaiser have classes on this issue and others. Ask about classes to help you know your rights etc.
Good luck and i hope you find a positive solution


Ms. Grau,
I question why you wrote the following:

At the time I didn’t know why he was telling me I would get denied if he was the one placing me on disability when all I wanted was to work.

Your doctor can not actually put you on disability (I understand) since you are the one that have to apply. I you just want to work why apply? If you can not work then you can not tell the Social Security office that you want to work because they will believe you and not approve your application. One can not work while getting disability. If you do not need it then do not accept it and take it from others that need it.

It sounds as if you do need it or will soon. I am sad for you. As I myself can hardly deal with the chronic problems I have.

My story getting disability:
Unlike most people I was not denied disability the first time I applied. I was told by the two attorneys I saw prior to my application that I would be turned down as a matter of course. I did not accept this. I sought out a non-attorney group that are disability advocates. They are trained to know how to fill out the forms exactly how judges want and I mine was done so and thus was approved within the first week of the judge seeing my application. It did take months for me to get all of my med records to submit with the application but again once the judge saw the application it went thru. The judge did not further questions for me (because of they prepared the application well) and in fact I did not even have to see him.


It took me 9 years, three different lawyers, three hearings and three different judges before I got approved! Do not give up!


35 years ago I worked as an aide at a spinal cord rehab facility in PA and I’ve heard of cases where quadriplegics with injuries as high as C-3/C-4 were denied. These are the patients who have to use the sip and puff straws to move around in their wheel chairs and need to be fed because they can’t even hold an adaptive spoon. Some of them stay on respirators for long periods of time

Life can be so cruel sometimes.

Carolyn Orbach

My darlin, EVERYONE IS DENIED DISABILITY, Initially, anyway. It’s a stall tactic. They’re hoping you’ll give up. They’d LOVE it if you gave up! Giving up is not an option! My best friend’s husband was about the sickest person I’ve witnessed in my 54 years on this earth. We experienced it all. With attorney, backup from the Dr’s etcetera. DENIED. WTF. XCUSE me. There were two appeals before approval. It was agonizing. Hang in there because there’s light at the end of your tunnel!


Johnna Stahl, DDS only has the names and contact info for friends, relatives, coworkers, ect if you give it to them. There is a question on the application regarding this. They often send forms to these people regarding your ability to function. If SSA/DDS has a question for you, they will ask you or ask those that you have given their contact info. If a case has been approved for disability and there is a reason to suspect fraud, they will send a investigator to ask you. SSA/DDS doesn’t have the time or money to play cat and mouse games. On the other hand, as I’ve said before, long & short term disability companies do employ these techniques.

Johnna Stahl

From Wikipedia page on Disability Determination Services:

Disability Determination Services, commonly called DDS, are state agencies, funded by the United States Federal Government. Their purpose is to make disability findings for the Social Security Administration…

Rarely, and in only a limited number of locations, an external investigation can be conducted by a DDS referral to a “Cooperative Disability Investigations” (CDI) unit. Such a referral is made only when fraud is suspected. [SSA only “rarely” suspects fraud?]

The purpose is to corroborate that the applicant’s statements reflect his/her real life activities. For example, there are cases when one will file for disability, falsely claiming to be unable to engage in various forms of physical activity. The fraudulent applicant is then observed performing tasks outside of a work setting that require the same skills. Such information could be used to then deny benefits.

The examiner and his/her representatives may also call or otherwise obtain statements from those known to the applicant. These persons may include relatives, friends, acquaintances, neighbors, co-workers, and teachers. These questions will be asked in a manner in which evidence may be corroborated.


The criteria for long term & short term disability isn’t the same as SSA disability. Long & short term disability do “spy” on you. SSA doesn’t.

Johnna Stahl

I think those who became disabled during the recession will have an even harder time obtaining Social Security benefits. There are certain factions in government that think the rise in Social Security filings and people on disability during the last 7 years is mainly due to people not wanting to work. (Because it’s so darn great to be unemployed. And being lazy is just too much fun to give up.)

Because if you’re not in a wheelchair, constantly depressed and in need of therapy, or if you don’t spend a lot of time in a fetal position as a way to manage pain — well, then, you are fully capable of working 40+ hours a week.

I recently read that a fibromyalgia patient had her long-term disability discontinued because the insurance company decided her daily internet activity was the same as having a job. (That’s right, health insurance companies track you on the internet.)

Anyway, it is just as easy to explain the rise in people with disabilities as being caused by all the toxins in our environment. And considering the number of chemicals that are labeled as “proprietary” and not open to disclosure, no one really knows what we’re breathing, drinking, and eating.

Heck, we could even blame the nation’s drug dealer (Big Pharma) for the rise in disability claims. I think Americans take more drugs than any other country — in part due to the expensive marketing efforts of this industry. Years ago, I saw a documentary about how treatment plants are unable to filter out all of the drugs found in our waste.


S L Weidner, I understand what you’re saying about not wanting to work while you were taking pain meds. But, the only thing that SSA is interested in is if you can perform SGA doing jobs in the national economy, if you’re under 50. From what you’ve said, you were able to work, but chose not to. That does not meet SSA disability definations. Your back issues didn’t meet the criteria for disbility, based on your medical records. But, from what you’ve said, your mental impairemts were severe enough to prevent you from doing your previous work as well as performing SGA working jobs in the national economy.

The non medical workers, ie caseworkers, are trained specially for their jobs. A dr reviews a claim at the initial stage before a decision is made.


SSI is based on disability, income & resources. If you’re found disabled by SSA but your income & resources exceed the criteria, you’re not able to draw SSI. Medicaid comes with SSI. The max Federal; amount for SSI in 2014 is $721 a month. There are no Dependent Benefits with SSI.

SSDI is based on disability and work credits. You must have enough work credits in order to qualify for SSDI. Medicare comes with SSDI. Dependent Benefits for your children and in some cases step children also come with SSDI.

SSDI & SSI, if your SSDI is less than $741 a month and if you meet the income & resource criteria for SSI, the SSI makes up the difference between what you receive in SSDI and $741 a month.

Yuck, read your denial letter from the ALJ. That letter states why you were denied. If it says anything about like “you have severe impairments but we found that there are still jobs in the national economy that you can do” or “we found that your imparments aren’t severe enough.” Your medical records don’t have the needed detailed info in them. You can also get a copy of the CD. The CD has the evidence the ALJ used to make the decision. Often all of the medical records aren’t there. Or they don’t state all the info the claimant thinks they do. Even when you have an attorney, you still need to call SSA caseworker/ALJ and verify medical records have been received as well as getting copies of your medical records and reading them. If there is enough evidence proving the claimant is unable to perform SGA doing jobs in the national economy if the claimant is under 50, or performig SGA if the claimant is 50+, the claimant is often approved On The Record without having to have a Hearing.

S L Weidner

I went through the process in starting 2001 finally Dec 2002 I was approved after seeing the SS Judge. Took 3 more months to get my check. I had a rushed hearing because we were loosing our home. The bank would not wait and we lost it 3 weeks before my approval.
SSD is just like pain medication, the bad apples in the bushel ruin it for the rest of us. My first husband was injured at work and we got SSD without any problem, that kept us afloat until he was able to go back to work. There were many back then that milked the system for all they could get. Just like those that go to the pill mills to get the pills then walk outside and start selling them
But I do agree the process should be faster. I feel like the process is reviewed by non medical personnel that doesn’t understand fully all the terminology used in the notes. In my case, I was sent for Pulmonary function testing because I have asthma, got a denial, appealed then sent for psychological testing, that one came out with a diagnosis. I started getting medical care at the VA and they sent me to psychiatrist and they came out with a totally different diagnosis. Never once was the issue of my severe Degenerative Disc Disease with spinal stenosis addressed. That was the main issue I quit working as the pain was horrendous and I was needing pain med more and more. I was a nurse and refused to work under the influence of narcotics as I wouldn’t want a nurse caring for me in that condition. The system needs to be overhauled, but I don’t see that happening anytime soon.


We’ve been going through this disability claim for a year now. It is way. Too long of a process. There is little to no help either for those in this process for medical or money wise. At this point I’ve exhausted my savings, all because at the young age 34 was told that my illnesses have got the better on me. My health issue are highly detailed. Though I don’t think that mattered at all. What did matter is my age. Do the claim was denied. So now it’s the appeals process. It’s my greatest fear that it will be another and then to beg in court why I can’t work. I started off with lawyer due to talking with others; and the only thing against me in this whole process is I’m young. Did I want to stop working? No. Not being able to work or continue my higher education (because I had to stop my education for my bachlor degree as well) has be mentally devastating for my self. Who in there right mind would want not work and instead be handed some horrid diseases that make your body turn against you? So I understand your frustration and fears on this and best of luck on your hearing.


A letter from your dr or your dr putting in your medical records that you can’t work carries no weight with SSA. The criteria a dr uses when he says a patient can’t work is not the same criteria SSA uses when they determine if a claimant is disabled or not.

It takes more than the diagnosis of a medically determined impairment to be approved for disability. Once a medically determined impairment has been diagnoised the focus shirts to the claimants ability to function. Have you told your drs the problems your impairments cause with your ability to function ? Have you told your drs the activities of daily living that you have trouble with, the ones others must help you with and the ones others must do for you ? Have you gotten copies of your medically records and read them. Drs don’t write everything we say down or everything they say to us. Drs also make mistakes. The only way you will know exactly what the medical evidence says is if you read it. Do your drs have the restrictions and limitations they’ve given you written down in your medical records ? If you’ve had any side effects to medications, is that written down correctly in your medical records ?

If you’re under 50, you must prove by medical and non medical evidence that your impairments prevent you from performing SGA ($1070 a month) doing jobs in the national economy. The jobs may being somethng you’ve never done before or know anything about. They also may be making less than you did in your previosu work. Your age and education are factored in. There is are also Transferrable Skills.

Medicaid/Medi-Cal is based on income & resources. If your income and/or resources exceed the criteria you’re not eligible for Medicaid/Medi-Cal.

Diane Succio

95% of all SSI claims are denied at 1st and yes it takes at least a year before they will even hear your claim. Thankfully the lawyers who handle disability claims get paid when and if you win. If they would go after all the fraudulent claims us who truly needs it would not have to jump through hoops. Wishing you the BEST!!!!!

Pat Allen

I hear what you’re saying. I feel for you, I too am going thru the same thing (problem). I have been trying to get mine for over 4 years now. Each day my problems are worse & at times unbearable. I am unable to walk, sleep, stand or sit for very long at a time. I would like nothing more than to be able to work, I miss the interaction of a job. I have lost 2 houses & everything I use to own, had to put my household & personal belongings in storage (that I lost because I could no longer pay the storage bill) because I had to live in my car. I had no where to go, no family to rely on. I am living day by day, not knowing what tomorrow will bring. I have nothing to show for all the years of hard work & nothing left to show I even existed for over the last 40 years. Everything I own now fits in storage tote. That is all I have left to my name thanks to the government.