Q&A, Our Way
Is it possible to be approved for Social Security Disability?
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
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
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
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!
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.
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
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
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)
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.
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
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
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
~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.
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
firstname.lastname@example.org or click on "Join Group" at this page:
From another CFSupport Email on Nov 14, 2005:Our Disability Section:
Social Security Disability Sites
(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
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.
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
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
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
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?!
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?
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
Q. HELLLLLLP !!!!!!!!!!!!!!! ?
A. You have raised wonderful issues and are rightly skeptical of things that are happening around you and in your SSDI case.
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!!!
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
Toni Marshall, 9/2008
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
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.
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