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Q&A, Our Way - SSDI

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Q&A, Our Way
Is it possible to be approved for Social Security Disability?

Photo of Kaleidoscope from this page
It isn't about which diagnosis one gets –– it's about symptom severity,
and the ability to describe very well how symptoms interfere with the ability
to do work activities and how symptoms affect consistent attendance and performance.

How I Won Social Security Disability Benefits on My First Try

by Toni Marshall

My story of Social Security Disability is quite wondrous.  I won benefits on my first completed request.  People at SSA were unbelievably nice to me, listened to me while I cried, explained SSDI did not mean I would NEVER work again because of their back to work program, god, I'm crying now, asking me how I was doing upon receipt of my application, listening again while I cried in frustration upon hearing there was another 6 page form to fill out.  Sobbing now.  I understand from a good SSDI lawyer my treatment by SSA employees is rare.

I attribute my quick approval of SSDI benefits to several things:

1-  Paper trail; years of asking doctors to provide "sick slips" for every hour out of the office for appointments, as required by my employer, feeling like a 2nd grader (again, I ask, what good is shame? those sick slips were just what I needed!  Who knew?);

2-  My hard-won knowledge of my conditions through the NOVA CFS support group, especially OI (orthostatic intolerance, esp. POTS & NMH), allowing connecting dots of so many symptoms I'd thought were just "weird me," like intolerance of temperatures over 70 degrees. Thanks, Elly, of the NOVA CFS support group. The group's website  has articles and links listed for finances and SSDI and other disability insurance, too;

3-  CFS ruling by Social Security Adm in 1999 : SSR 99-2p, including a copy of it with my SSDI request, adding a one page note pointing out the ways I qualify for benefits based on the 1999 ruling.  Read it; you may like it! [In April 2014, a new Ruling for CFS was published, SSR 14-1p.]

4-  Summarizing in columns most relevant doctor's records (all doc records copied and included with request) by date, by doctor, by symptom or test in 3 handwritten pages;

5-  Completing application by hand - no computer then, terrible typist;
I'd been told by others whose SSDI requests were done on computer, SSA asked them, "Your work looks good.  Why can't you work at a computer?"  (OI means can't sit upright long w/o pain, dizziness, brain fog while denying it!).

6-  Including all four handwritten incomplete attempts answering SSA's qualifying forms
(6 page daily activities questionnaire [DAQ]) with a cover page describing my inability to complete them with any degree of adequacy due to confusion and anxiety based on the irrelevancy of many of the questions for my condition and more (designed to accommodate every conceivable disability; after all, what if they've never heard of your particular disabling illness?).

7-  Being made to understand SSA cares not a whit what my diagnosis is, nor what my doctor is willing to put on paper, although you don't win benefits without validation from a doc.  SSA needs to determine whether I can work, providing opportunities for me to describe accommodations I must make for any activity.  Since I made plenty of accommodations or I'd not be able to do much at all, I just had to know to describe them in detail, thanks to Elly Brosius and others at the support group.

I appreciate living in a country with Social Security Disability, realizing how many countries in the world where my condition would never be diagnosed, and I'd be left homeless or living with family, which you may have read would be a true hardship, but, better than homelessness.

I appreciate SSA's job includes being suspicious, to avoid, as best they can, benefits given to those who really CAN work.

I appreciate SSA's need to save money for those who need it the most.

I appreciate those people who thought they needed SSDI, but gave up when turned down once and went to work, like one of my relatives, who has severe Fibromyalgia, but has accomplished a Bachelor's Degree and a better job since then.  She's still suffering, a lot, but is still able to work.

I am unabashedly grateful to our government, to President F D Roosevelt and the Congress at that time for establishing SSA and SSDI and SSI, and for all the legislators who've done their best to keep it a viable program ever since, allowing me to live alone, to find peace in myself and with my family with dignity, even with sheets over my towers of stuff all over.  I'm also really grateful the SSDI application process is over for me. It was sooooo hard!

Toni Marshall

PS. Thanks, too, to the people who nagged me over and over just to get some parts of the application done and turned in, because without that step, nothing else could happen.

Photo of Kaleidoscope from this page     Photo of Kaleidoscope from this page     Photo of Kaleidoscope from this page

Graphic art by Toni Marshall. February 2013.
Made from text on this page with and iPodTouch and Picture Kaleidoscope app.

SSDI: Anxiety Relief Strategies

by Toni Marshall

The journey toward accepting and applying for disability has lessons for all of us. While this article is about applying for Social Security Disability Income (SSDI) or Supplemental Security Income (SSI), it's also about getting to know and accept oneself and one's limitations. Dealing with the job of preparing paperwork and documentation in the midst of feeling the worst you've ever felt made worse by possible cognitive impairment is harrowing. Perspective and attitude are as helpful to the process as information and being able to fill out forms and answer questions.

Social Security disability is designed to accommodate people who are unable to work who qualify by paying into the system for a specified time, per one's age when applying. Throughout the application process, the most important information to provide to SSA are detailed descriptions of the ways one's condition(s) compromises ability to work, including every accommodation made for functioning every day. It helps to have a paper trail, documentation of problems and symptoms by employers and doctors, if available, for more than six months prior to application.

This article began with email answers to questions from 2 people applying for benefits in late 2005. Their questions reflected the same palpable anxiety and insecurity I felt when I applied for SSDI. Anxiety and insecurity are somewhat relieved with information and a focus on what Social Security Administration (SSA) needs from applicants in order to approve SSI/SSDI benefits. One of these people and myself were approved for benefits on our first applications for disability.

An article by C. Bowie in the CFIDS Chronicle helped me understand why the SSDI process is so difficult. Thinking, writing and talking about every aspect of living with my disabling conditions, necessary to complete the application and daily activities questionnaire, is something any sane person would want to avoid as much as possible in order to get through ordinary days. Bowie recommended having emotionally supportive help really close by for the devastating task of facing each and every symptom and ramification of illness. The good news is, once SSDI paperwork is completed, one can return to the bliss of avoiding thinking and writing about disabling symptoms again for awhile.

Contents of the following article include:

  • Your first call to SSA for a disability application is all that is needed to establish your application date, a very important date;

  • Use the SSA's rulings to your advantage:
  • Your own copies of records of doctor visits, exams, blood tests and all other tests are yours to ask for, and will prove useful when applying for SSDI or SSI;

  • Make several sets of copies of documentation and necessary paperwork;

  • Accept support and assistance from others who've been down this road before you;

  • Know yourself by learning and understanding the many ways your conditions contribute to your inability to work; that is, learn to recognize your symptoms rather than ignore them as you've been doing, a painful but necessary part of the process;

  • Know your audience. Think about who you are writing this for and what they need to see. What they need to see and what you want to write are probably very different.

  • Protect your audience from your anger and frustration, turning to journals, friends, family, support groups for ranting about the unfairness of it all, including the chronic nature of your symptoms;

  • Persistence and faith in yourself and the system helps pave the way to having your needs met.

An SSDI lawyer may be helpful. Their fees are fixed to a percentage of "back pay" (between date of application or onset and the date benefits are approved), which used to be 2 years, now is only one year. Mitch Lambros' presentations at our support group meetings are a great opportunity to ask questions about the process of applying for  Social Security Disability Income (SSDI) or Supplemental Security Income (SSI). Mr. Lambros appears at our meetings about once a year.

The following is my perspective on the process. I was approved for SSDI benefits on my first application - that is, the one that finally included all necessary documentation to SSDI; it took me a full year after sending my application to complete the six-page Daily Activities Questionnaire (DAQ). In other words, the biggest hold up of approval of my SSDI benefits was me. I found the paperwork, the forms, the questions, the answers too overwhelming, too confusing, and was unable to concentrate most of the time. In addition, I was in denial and wishing I didn't have to apply for SSDI, wishing it would all just go away. I wanted to work. Even with help from family and a lawyer familiar with the application process was not enough for me to feel confident to mail the application in the first place for a full year, and the DAQ in the second place for another full year.

Collect documentation and necessary paperwork:

Calling to request a disability application creates an application date for you, the date of your telephone request, which is a very important and generous policy of SSA.  Call SSA (800) 772-1213.

Lawyers will ask your doctors and other professional care givers for your records.  These records will prove so useful to you, it is best you request your doctors' records for your own files, copying them for your lawyer, SSA, making extra copies in case the lawyer or SSA loses them, which is common.  Doctors and professionals often charge for copying and mailing records since it's extra work for them; if you can't pay, some doctors will negotiate or waive the costs.

Summarize Relevant Doctor Visits and Tests
Guide lawyer and SSA to pertinent information:

Create a summary cover sheet referring to specific dates for specific doctors/professionals which refers to relevant symptoms, issues, complaints and tests in chart form, if possible. Reviewers will appreciate a guide to the pertinent facts in your case so they don't have to read all doctors' records, difficult even with a summary, to find what you know is there on which dates.

My summary was written in my own handwriting, which was revealing in itself, such a mess. Computer generated documentation may give the appearance of ease with a computer which may or may not exist. If using a typewriter or computer for writing any part of your documentation to SSA, describe every accommodation you found necessary in order to successfully use a computer and include the amount of time necessary for editing and completion.

Call SSA for, or print a copy of, the April 2014 Social Security Ruling, SSR-14-1p

It is helpful to include a copy of the ruling on top of your application and/or the completed DAQ along with a short statement that you qualify for SSDI/SSI according to the ruling. Here's the link to the SSA website for reading and/or printing the ruling:

Read the ruling to decide whether the criteria for CFS disability applies to your condition(s). The ruling may apply to you whether you have been diagnosed with CFS or not, since symptoms of CFS overlap with OI, FM, MCS, GWS, MVPS/D and Lyme disease. If you find the criteria in the ruling applies to your conditions/symptoms, attach a copy of the ruling to the top of your application and/or Daily Activities Questionnaire (DAQ), with a short statement that you qualify for disability under this ruling. This saves SSA personnel from having to remember there is a ruling or from having look for the ruling in their files.

Copy everything several times before you send documentation and applications to SSA, and, to your lawyer.  Keeping 2 copies of everything sent will save you copying it all again if SSA loses your documentation.  I was told my papers were lost, but I was ready to send them my extra package when they suddenly found them again.  I've needed some documentation for other purposes since then, so was glad to have 2 copies.

Doctors often charge for the time to fill out SSDI forms sent them by SSA. This is work that must be done outside of their offices, usually. Such work may not be charged to insurance companies and is often difficult to accomplish during office hours. My doctor does this kind of work on weekends, taking time from family. Many doctors never bother to answer SSA's request for documentation about your disability. It's well worth whatever doctors charge for such work, since it means they're willing to help you in this way.

If further documentation of your condition is needed, undergo testing. If you don't really need it, avoid it. Testing can be stressful and invasive, creating relapse or more symptoms for stress-sensitive patients with CFS/FM/OI. An experienced lawyer will suggest what you need.

Find someone to drive you to any SSA appointments, including doctors SSA requests you to see. If being driven isn't possible, explain, during these appointments, any accommodations needed or difficulties encountered by driving yourself, and I don't mean traffic.

Ask a supportive family member or friend to attend any SSA hearings, but only if they're supportive. Avoid showing up with anyone who doubts anything is all that wrong with you.

Know yourself:

Read and learn as much about your diagnoses as possible.  Denial, resistance and fear of the reality of your symptoms and their ramifications, as well as embarrassment, indignity, and discomfort of having to face disability are powerful forces.  Giving in to fear and embarrassment may prevent an adequate presentation of your case for disability.

For example, my sister was so proud of what she could do in spite of disability, she was denied benefits several times over several years until a lawyer pointed out how many accommodations she made in order to do anything.  When she finally found a lawyer who was paying attention to my sister's false pride, he instructed her to describe her accommodations to SSA and her benefits were approved.  This is an example of neglecting to understand one's audience.  My sister expected SSA to celebrate all she could do as much as she did. They celebrated in their way by denying her benefits, saving money for people who couldn't do things.  My sister's story also demonstrates the power of denial due to my sister's sense of shame over having to apply for disability in the first place.

Another example is my own case.  I was slow to appreciate how disabled I was, taking years to complete the application and the Daily Activities Questionnaire.  In the meantime, I read all I could and went to meetings, talked to group members with symptoms like mine, who were few and far between. 

I never quite felt I was in the right place until 2 years later.  That was when I read a list of symptoms of MVPS/D listed on the back of an MVPS/D Support Group newsletter.  I've never been diagnosed with MVPS/D.  However, I'd never experienced being understood so well as when I read that list, a clue that diagnosis is helpful but not necessary. 

I was grateful for the time to learn, because, by then, I understood many symptoms were related, and not just weird as I'd so often believed, often saying so out loud.  My conditions were disabling, not just weird, troubling and temporary.  I didn't want to believe this when I first requested the SSDI Application.  Another clue to life:  it's not always about what you want.

Protect your Audience from expressions of anger and frustration:

It is normal and natural to feel profound frustration, fear, and anger during the SSA application process.  You may be reminded of many unpleasant occurrences, faced with memories of people and professionals who were less than helpful.  In addition, you may be bewildered by the confusing questions on the SSDI application which have no relevance to your situation.   SSA applications and Activities Questionnaires are confusing because they're designed to accommodate every conceivable disabling condition.

Expressing anger in your answers on the application and DAQ has a great likelihood of undermining your case if expressed in your application or DAQ.  You may find it useful to keep a notebook handy for expressing frustration and anger while dealing with paperwork.  Your anger may be aimed at family, friends, SSA, doctors, other professionals who were not helpful, sent you on wild goose chases, told you to see a psychiatrist, or to take cancer drugs, as nurse friends of a friend told me.  Support groups are great places to express frustration, as many have been there before you, understand what you're experiencing, even more than friends and family, and, may be able to guide you or offer needed perspective.
Social Security disability application reviewers are people who may have diagnoses, aches and pains of their own.  Ours is not a nation of particularly healthy people.  Reviewers need to be able to see clearly how your aches and pains prevent you from working in ways their aches and pains do not.  Treat every question on both the application and subsequent DAQ as an opportunity to explain how YOUR symptoms, in particular, and in detail, preclude you from working.   Provide examples of as many accommodations as you can possibly remember that you must make to your conditions in order to function.  This will help distinguish you from those with aches and pains who can work.

Know your audience in the application process:

Applying for disability may be a difficult, even harrowing experience for some.  At such a time, it is difficult to be mindful of anything but the task at hand and how scared you are and how rotten you feel.  Nevertheless, some perspective may prove calming.

~It is SSA's job to review cases for benefits for people who cannot work, granting benefits to those who've successfully answered their every objection as to inability to work;

~SSA's job is to be finicky and suspicious, since there is a limited amount of money available to be protected for those who need it the most;

~If SSA turns you down the first time, remember the first level reviewers are not usually doctors and have little authority; rejection brings you closer to the next step, which is closer to approval;

~If SSA takes a long time to review your case, remember, they deal with a tremendous number of applications with a staff limited by budget constraints.  There may be a large staff, but not compared to the number of applicants;

~SSA's job is to look for ways to tell you to go to work anyway, since every application they turn down leaves more money for more people unable to work.  SSA's rejection does not mean your case is not worthy of benefits, only that they have unresolved doubts about your inability to work, and you have more detailed work to do. 

Honor the SSA by providing them with the detailed information they need to establish your inability to work due to your condition(s) so they may honor you with approval of disability benefits. 

Six years after SSA approved my request for SSDI, I'm grateful such an agency exists.  SSDI benefits have allowed me to live on my own, hard as that is, since living with family would be very difficult.  I'm amazed and happy to find myself living on what I was sure would not be enough. With SSDI and disability retirement from my job, I'm doing ok.  The SSDI application process was harrowing for me, but I'm happy I was able to have help and to complete it.  I'm really happy it's behind me.

I wish you the best in your SSDI request.

(410) 647-7578

First appeared November 2005, and again, edited, 7/06 via CFSupport Email.
Latest Web Update May 6, 2014.

To join our Yahoo! Group, CFSupport, send a blank e-mail to or click on "Join Group" at this page:


From another CFSupport Email on Nov 14, 2005:

Social Security Disability Sites

  • Our Disability Section:

    (has a page on Fibromyalgia, Lyme)

  • The CFIDS Association's page of info and resources:

  • Helping Fibromyalgia Patients Obtain Social Security Benefits:
    (Including The Role of the Physician) by Joshua W. Potter, Esq.

  • 9 articles for CFIDS and disability can be found here:

    Facing a Social Security Hearing

    People facing a Social Security Disability hearing are naturally afraid the hearing will go badly, afraid they will not be believed, afraid they will garble their story badly due to stress, afraid they will be turned down and have to face another level of hearings or more.

    When I faced a Social Security hearing, I had all those fears too, but, I won my case for back pay.

    What helped, a lot, was my lawyer, Mitch Lambros, who told the judge how emotionally spacey and all over the place I was, talking non-stop, rambling rather than conversing, for the 45 minutes we waited for the judge in a large closet with a table and 2 chairs.  I know my symptoms are made worse by sitting upright, so I sat on the floor. 

    Once in the judge's hearing room, I asked the judge or probably the judge's clerk, who was there first, if I could put my feet up on another chair, and they said yes.  I used a cheap cotton scarf to avoid dirt on the chair out of respect for the furniture and for the judge.

    Seems minor, but, living our conditions is imperative in front of a judge. Social Security is not impressed by how normal you seem.  Disability is messy. 

    If there is ever a time to give up any illusions of normality, it is in front of a Social Security Disability judge.

    During difficult, stressful times like applying for Social Security Disability, we are emotional bombs, ready to go off with the slightest trigger.  We're likely to talk to the judge about the emotional upheaval we're going through.  It's probably better to let someone else describe you reactions to stress.  Like compliments,  emotional upheavals are better described by those who observe you in daily life than by yourself.  You know how hard it is for others to understand.  Better to save your breath, let someone else do the hard lifting here, if you can.

    All the judge cares about, what the judge's job is to find out: "Can you work?"

    Social Security is for people who are completely unable to work.

    Most people are emotionally conflicted about this.  Many people with FM/CFS/OI/ME state at their hearing they are able to work with accommodations. Vocational Rehabilitation agencies have the job of finding work for disabled people who can work but who need serious accommodations. That is NOT Social Security's job.

    Seriously consider every way you may be conflicted about going back to work in the time of waiting for an answer from Social Security, waiting for a hearing date, or even applying in the first place.  Writing may be helpful to examine the emotions getting in the way of confronting your real abilities, your real limitations, your real life.  This is the real reason most people lose social security benefits, especially in front of a judge.  People tend to believe they can work if only this or if only that, because most people who apply for Social Security truly want their jobs back, their lives back the way they were.

    Time helped me come to terms with the unthinkable, that I may never work again.  It took so much time, so many attempts at filling out the paperwork for disability, I was able to realize, to begin to understand my conditions, not just the names and diagnoses, but, the actual impact of my activities on my condition.  Finally, I became convinced I really was unable to do any kind of work at all.  I think that's why I won disability so easily, I was finally understanding my disability was real, not temporary, not going away any time soon, and all my activities were seriously impacting my conditions, my body.

    I won benefits on my first try; I had a hearing for my request for "back pay," a sorry word for what social security pays from your date of disability to the date they finally approve benefits; "real" back pay would have been for my job, but I couldn't work.  Oh well.  SSDI benefits ain't hay!

    Take time to note, preferably in a notebook or two, all the ways you must accommodate to your conditions for everything you are currently able to do. 

    For instance, when I shop, I get through it by using a golfing stool (tripod legs, fold up seat, may be used as a cane, called "Sport Seat") for reading labels and waiting to check out.  I cannot use the self-check out, too confusing, too stressful, I need help with everything, including how to use card machine.  Once home with groceries, anything really, but it's much more critical with groceries, I'm usually unable to get them into the house.  If it's cold, I use my car as a Fridge until I can rest long enough to get 'em in house.  Once in house, groceries often sit on the floor for 24 hours or more before I can get 'em in the refrigerator and freezer.  Dry stuff may sit in living room or kitchen for weeks until they're used up.  If I make the mistake of shopping alone, I face frozen foods thawing, fresh foods going bad, chocolate freezing or melting in the car, etc.  I live alone, now have outside help with groceries.

    These may not be your challenges, or, you may find when you stand in line you suddenly feel very anxious, which is your body's response to standing, or, something else happens.  Notice how you feel doing whatever you do, including using the computer.  Do you have accommodating behavior using computer?  Taking a bath?  Watching tv?  Can you sit up on the couch to watch tv?  Do you avoid certain tv shows because they're too stressful?  Do you have trouble reading?  Can you hold a book up to read for long periods?  How do you feel washing dishes?  Is it different from drying dishes?  How do you feel cooking?  Do you let others open the oven because the heat wave does you in?  Do you have trouble carrying a casserole from the oven, or a heavy pot from the stove?  Do you have to sit to cut vegetables?  Or what else happens when you try to make food for yourself?  For others?

    This is your story.  Take your waiting time for whatever step you're in to seriously examine and list every accommodation you must make to your condition you can think of, which is critical to showing you are completely unable to work, unable to be a reliable worker for an employer.

    If you live with someone who cares about you, it is really helpful for them to come along, to drive you there. By the way, do NOT drive yourself.  Someone who cares who spends a lot of time with you can describe what it's like to live with you, what kind of help you need, how hard you try but can't seem to ... whatever.  Another person is better able to describe your emotional reactions in everyday life.  Also, someone else being there, saying all that, means you don't have to remember so much, will be less overwhelmed by this scary, traumatic experience.  It is traumatic to give up any notions of being able to work for what may possibly be for the rest of your life.

    You may be able to work later.  That idea, discussing it with the woman who answered the phone when I called Social Security Administration to ask a few questions about Disability, the idea I may work again one day is what allowed me to say yes when the SSA person asked me for the fourth time, "Do you want me to send you a Disability Application?"  Now, I cannot work, and I need a lot of help to do ordinary things, and that's why I was granted social security benefits on my first try, because I came to understand that.

    by Toni Marshall, 2/26/08

    SSDI "I'm feeling desperate and overwhelmed"
    Short Q&A's with Toni

    Q. Is it to a lawyer's advantage to take a long time getting clients approved for SSDI/SSI because they are paid from "back pay" or "lump sums?"

    A. While it is true lawyers make more money when SSDI takes longer, many lawyers won't even take a disability case until you have been turned down twice. Lawyers for SSDI are limited by the government to a percentage of back pay, and must make prudent decisions in order to make a living, and that's why many lawyers do not get involved in early cases, because if a lot of clients applying for disability are approved fast, the lawyer doesn't make enough money to make a living, which every working person is responsible to do. There are plenty of lawyers who make only a living and are not at all rich or living high, just doing their jobs to take care of selves and families.

    Consider giving your lawyer the benefit of the doubt. If they deal with SSDI, they are likely knowledgeable and know what they are doing.

    Lawyers do not have time to answer our questions before hearings or other important deadlines, often dealing with the case in front of them that day. If they are knowledgeable, that is usually enough.

    Q. I am so sick and depressed. How can they expect me to do this on my own?!
    A. It is completely unfair to have to deal with this level of complicated paperwork, collecting and writing about the very worst of your symptoms while suffering some of the worst and scariest losses you have ever experienced in your life.

    On the other hand, how motivated would you be to do this extremely difficult work if you were in better physical and emotional shape and weren't desperate to sleep in a bed again?

    If Social Security Administration were to grant SSDI to people who were having a hard time but were better able to handle paperwork while not suffering as much as we all do or did when applying for SSDI, SSA would run out of money fast.

    There's a reason it is so hard. There's only so much DISABILITY money to go around and it must be preserved for those who need it the very most, like you and like me (SSA retirement funds are a different issue).

    Find or keep a lawyer. You're in no shape to be able to handle this challenge on your own.

    Q. I have no money to get my records from all of my doctors. Now what do I do?
    A. When I applied for disability, I had no money either and wrote to my doctors and explained I would love to pay them for the extra work of their staff and the paper, time, printing ink and mailing of my doctors' records if I had money to do so. All of them forwarded my records with only a minor adjusted payment to one doctor. They richly deserve to be paid as they must pay someone to do the work and expenses. But you can only do what you can do. Most doctors will understand.

    Q. HELLLLLLP !!!!!!!!!!!!!!!  ?
    A. You have raised wonderful issues and are rightly skeptical of things that are happening around you and in your SSDI case.

    Just remember:

    1 - This is a completely new experience for you;

    2 - Your questions are perfectly natural and urgent;

    3 - Lawyers are a lot more familiar with the process than you are. They are worthy of trust if knowledgeable of SSDI.

    Q. My doctor sent my records. 
          I am now upset to find only a diagnosis of Raynaud's Syndrome
           though I have many symptoms other than those of Raynaud's Syndrome.
            How will I qualify for SSDI/SSI? I have FM. Help!!!

    A. Raynaud's syndrome was a surprise to me, diagnosed during a research thing, with no real test as I recall, just answering questions. Not to worry. It's part of this bigger thing you have which is the "central nervous system disorder" some researchers and groups are now including as part of the definition of FM. I see it as part of or related to my Orthostatic Intolerance, a form of Dysautonomia or "dysfunction of the autonomic nervous system."

    Proving disability is not about a specific diagnosis necessarily. Its more about explaining how your symptoms impact your functioning and with what severity and frequency. Can you work and why not? Can you bathe and feed yourself? Can you drive, how far? Can you handle public transportation if you can't drive? If not, what happens? Can you concentrate? Are you consistent?

    Everything about applying for SSDI has an emotional impact as well as physical consequences with brain fog and so on. It is normal to panic over applying for SSDI or SSI or over any aspect of the process such as requesting and paying for doctors' records and reading them, finding out what they wrote, what they neglected to note.

    Panic may fade with appreciation for the doctors making those notes so you can read and understand what you must do next. You may appreciate how much SSA respects your seeking help for your problems. You may appreciate other people more now who suffer similarly, who have been through the process of applying for disability successfully, and are now able to encourage you to go on knowing how hard it was for them and now for you.

    A lawyer who is at all familiar with these syndromes and/or has done a lot of successful disability cases is most helpful.

    A lawyer is also helpful to alleviate panic if they can explain some reasons why yours is a good case for disability.

    Doctors are only part of the process of applying for SSDI/SSI. Pain and other symptoms are only part of the picture.

    It is necessary for you to believe you cannot work or that working disrupts your life so much you cannot take care of yourself very well. Then you are in a position to make the strong case why you can't work. There is much opportunity for breaking through denial in this phase. But it is so difficult. No one wants it to be true that they are disabled. We want to wake up the next day and its gone. We still hope that can happen. Do the application. If it happens you do get well, you can drop the application later. If you don't, you are that much further along.

    It is important for you to have custody of copies of your records from doctors. One reason is to know what the records say about you even though it is often quite painful to read. This allows you to have a foot in the door in defending yourself in a court or hearing dispute over your illness experiences. Holding your own doctors' records allow you to copy them for your lawyer, social security administration, other parties, always maintaining copies for your own files.

    Your records indicate the many times you sought help from a professional you thought may be able to help you. SSDI needs to know you are and were invested in seeking treatment for your physical problems. SSDI is not impressed with people who say they suffer but never complain, especially if they never complain to a doctor.

    Look carefully for what the nurses or whoever wrote about why you were in the doctors' offices on any day. They usually write down exactly what you say. If you are only finding one set of handwriting, you need to ask for ALL of your records.

    SSDI cares the most about whether or not you can work any job at all reliably over time.

    This means your opportunity to make your case is wide open and in front of you, no matter what the past doctors have said, since your job applying for social security is now the most important job you will ever have, which is to answer every objection they may have to your not being able to work.

    You have the opportunity to add some stops, some new doctors, in your seeking evaluation and treatment paper trail. You can also send in letters or symptom logs to be put in your doctor's files as part of your medical record and send copies to your SSDI attorney.

    Getting the income is important and may be one the hardest "job" you ever do. But you need it. Think about it. You go through your day, you do this, you do that, you dress, eat, go to the bathroom by yourself, and you think, getting so good and ignoring how bad you feel, or sometimes feeling ok because you are not working and you might even say to yourself "Well, this is ridiculous! There's nothing wrong with me. I need to go to work. Ok, yeah, I hurt and all, but who doesn't have aches and pains?" (Certainly, SSDI reviewers all have aches and pains!)

    If you are anything like me, you are your biggest objector to your not being able to work because you want to go back to work so badly. My friend with MS inspired the words above, thinking, "I should be working" before she remembered she had to have help getting dressed that morning. I don't need help getting dressed. Imagine what I said to myself when applying for Social Security?

    It is now your most important job to overcome denial of your conditions, symptoms, inability to work. This is not for all time, but for the period of time it takes to complete the SSDI application and possibly hearing process. Once one is approved for SSDI benefits, going back into denial of your most serious and disabling symptoms for a time is a welcome relief in living day by day.

    Toni Marshall, 9/2008

    New 2014 CFS Disability SSA Ruling: SSR 14-1p

    by Toni Marshall for CFSupport
    April 22, 2014

    The new CFS disability ruling differs from Social Security Administration's 1999-2p ruling in that the International Consensus Criteria for ME, published 2011, and Canadian Consensus Criteria for CFS, published 2003, were adapted along with the CDC's CFS criteria.

    • The tilt table test to establish OI (Neurally Mediated Hypotension) is still considered medical evidence in CFS even though many doctors consider it too symptom-causing in OI patients to recommend it anymore.

    • EBV titers within certain parameters are still part of medical evidence relevant to CFS.

    • SSA depends on clinical history of at least 12 months to establish evidence of neurological symptoms of CFS such as memory problems and unrefreshing sleep.

    It was easier to read than I expected though I glazed over some facts that are hard for me to remember or understand like the EBV titers.

    If you are considering applying for disability, I recommend reading the new ruling here:

    When I sent in my answers to the daily activities questionnaire (which arrives a few weeks after SSDI application is submitted) after applying for disability a year earlier, I enclosed a copy of SSR 99-2p with a statement of my own letting SSA know in what ways the ruling applied to my case of disability. As a former, very fatigued state auditor, I knew that not every SSA employee with responsibility for reviewing CFS cases would look up the ruling. I won disability soon thereafter.

    With my application, I sent self-obtained copies of doctors' records covered with a list of relevant to my disabled state visits and tests with date and doctor names. Doctors have no obligation to respond to SSA's requests for information about disability of their patients. In fact some doctors you may have seen for relevant symptoms may have no idea you were or became disabled. Therefore, I thought it important to ask all those doctors with relevant data even from many years before applying for disability for relevant records.

    For example, years before, I had a serious B-12 deficiency which causes great fatigue. After correcting the problem with visits to the doctor for shots of B-12, I was still extremely exhausted. So I asked another doctor I was seeing for another test to see if I was able to absorb B-12. I had a nuclear test that substantiated adequate B-12 absorption. I didn't apply for disability for 4 more years but those records establishing exhaustion with seemingly no physical reason for it were helpful to my disability case.

    Reprinted from CFSupport E-mail 2762

    Published May 3, 2014, at ProHealth as
    Applying for Disability? The Guidelines for CFS Have Changed

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    Updated May 7, 2014