If you have severe Chronic Fatigue Syndrome and you are unable to work, applying for disability may be one of the smartest things you ever do, and winning your claim may be one of the best things that ever happens to you. It certainly was for me.
Reading more and learning more and taking more steps is the best possible thing you could be doing right now. In my experience, and my observation, the people who learn and question and wonder and persist are the people who win their claims.
You do not have to do a lot (obviously, if you could do a lot you wouldn't need to apply for disability!) If you have even a little bit of energy, to take just a little bit of steps, or if you have a loved one who can assist you with this, you can be such a wonderful help for your case.
This list brings together a whole lot of different information and ideas gathered from disability lawyers, social security policy manuals, and first-hand experiences from other people who have been approved. I have double-checked everything written here to line up with the Social Security policies. This list is a work-in-progress and input is very welcome. Please send me your thoughts, comments, suggestions, stories, and ideas.
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What To Expect While Traveling Down the Disability Road
Disability can be a long bumpy road with interesting adventures along the way. Stay on the road. Don't give up hope. Keep taking small steps forward and you can arrive somewhere good at the end. The process takes most people about two years. However, I have met people who were approved after one month, and I have met people who were approved after five years. The stages of most disability applications are:
This decision gets made based on paperwork submitted by you and your doctor. It takes about 5 months, but can be faster or slower. Roughly 33% are approved.
This stage exists in some states, but not all. It takes about 2 months but can be faster or slower. It is a review of your last application. You have the option to submit new materials but most people don't do this, which is why.... Roughly 7% are approved.
This decision gets made based on paperwork from you plus paperwork from your doctor plus paperwork from your lawyer (if you have one) plus a hearing with a judge. It generally takes 1 - 2 years. Check the wait time in your area. Roughly 65% are approved.
Appeals Council and Federal Court
Most people don't persist to this stage. It is a bit complex, so I will save this for another day. For now, let's just hope you get approved at one of the earlier stages.
Disability is the wild west of government bureaucracy and anything can happen. However, there is good news. You can dramatically change the odds in your favor. If you are able to follow the ten steps on this page you can greatly improve your chances of being approved early on.
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You Can Make a Difference
It is possible to be approved for disability for Chronic Fatigue Syndrome (I can tell you for sure, since I am). Although the disability process is bewildering and mysterious, it is also possible to untangle. It possible to take small steps that will make a great difference.
Many of the people who work at Social Security also find it bewildering and mysterious. The policies are so confusing that very often even the people who work there don't know the policies. I talk all the time to people who contact Social Security and are told that what they are trying to do is not possible, and so they go home and give up.
Don't give up! If you are genuinely too sick to work, you can get approved.
The folks who work at Social Security may be good people, but they are quite often overloaded with paperwork. You can make life easier for them. You can put together a great application that meets all the guidelines and gives them all information they need to easily make a fair decision. You can follow the steps on this page and give them an application they can approve. It is a win-win.
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Why am I reading this list? Won't my lawyer and doctor do all this?
Sadly, no. Your lawyer and doctor are not going to do most of these things for you.
Your doctor may help you with your medical condition and treatment, but it is very unlikely that your doctor will know anything about Social Security policies and regulations. Very, very (very!) few doctors are knowledgable about how decisions are made at Social Security. This is not something they teach in med school. Lucky for you, you are here reading this. You can learn the guidelines and you can help make sure that Social Security is getting everything they need to make the best decision possible for your case
Your lawyer may also do things to help you, like assist with your appeal hearing, or assist you if you run into a problem with your case, but they are not going to do most of the things on this list.
If you get a lawyer or representative to help you, that is great. They can definitely help, and hiring a lawyer can give you peace of mind. But if you think your lawyer will just win your claim for you, you are taking a bit of gamble. And the stakes are high.
Some people get lawyers at the beginning, and some people wait until they appeal. Some people are helped a lot by lawyers and some people are helped a little and (sadly) some people report they are not helped at all. Either way, this is the list of things your lawyer doesn't do for you. This is the list of things you can do to help yourself.
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Get Yourself the Right Kind of Doctor
Social Security is very particular about what kind of doctor they would like you to see. They will consider medical evidence from a medical or osteopathic doctor. (These are doctors that have the letters MD or DO after their names). They will also consider medical evidence from a Psychologist or Psychiatrist.
Here is a little list I put together of how to tell if your doctor is the right kind of doctor. If you are not seeing the right kind of doctor, you can still submit these records and they may help, but they will not be considered medical evidence.
A doctor who is a Chronic Fatigue Syndrome specialist is great! But not required. Many areas do not have CFS specialists. And some people are unable to afford specialists. If this is your situation, do not give up hope. Some online articles state that you must have a CFS specialist, but this is not the Social Security policy.
Any type of MD who is supportive and willing to work with you will be able to help your claim, especially if you assist them by following these ten steps. Most doctors know very little (or absolutely nothing) about Social Security policies. Even if your doctor is a CFS specialists, never assume they will know the first thing about Social Security guidelines and regulations. The more you can work with your doctor the better your chances will be of creating the right kind of records.
Social security would like you to see your doctor "frequently" and "ongoingly." A doctor that you have only seen once or twice may be helpful, but these records will not be given as much weight.
Find Out What Your Doctor Thinks
It's super important to tell your doctor about your application and ask them what they think. You won’t know if you don’t ask. What to say and what to ask.
It is also a great idea to collect your full medical records and see what your doctor is writing about you. Then you will really know. Believe me when I tell you, you want to know now, not later.
If you don't get the answer you were hoping for, here's some ideas for what to do if your doc is not totally supportive. There are a whole bunch of reasons why your doctor might be hesitant (hint: most of them have nothing at all to do with you or your health). It might help if you can figure out why your doctor might not be supportive
If you try these things and your doctor still does not support your claim, run don't walk and find yourself a better doctor. There is someone out there who will believe in you, you just have to find them. Looking for a little inspiration? Here's a story of someone who switched doctors and it was the best thing he ever did!
Start Great Visits
The key to great doctor's records is great doctor's visits. Here's How to have great visits that create great records that win your claim
This is super important! Read this list and burn it into your memory. Please try to do these things if you can. If anyone reading here is already on disability, please read this too. Basically, do these things forever.
Document Signs & Symptoms
Social Security has a special ruling about Chronic Fatigue Syndrome. Unfortunately, it is super confusing. To keep your head from exploding, I have put together this simpler list of Medical Signs & Symptoms from the ruling.
Social Security would like your signs and symptoms to be documented by a doctor over a period of six months or more. Go back to step one! Make sure your doctor is the right kind of doctor.
If at all possible, it is wonderful if you can review this list with your doctor and talk about how to document this in your medical records.
Please keep in mind: Never, ever assume that your doctor will know anything about Social Security policies if you do not show them. They don't teach this stuff in med school!
Get Your Records in Your Own Two Hands
Some people do not find out what is in their medical records until the day they show up for their hearing. Believe me when I tell you, you don't want to be one of those people.
It's a great idea to get your own records, read your own records, learn what your doctor is writing about you, learn what Social Security is writing about you, and keep track of what is and isn't in your fie.
If some of your medical records get lost or go missing from your Social Security file, they will not tell you. They will just deny you. Sad but true.
If you have a lawyer, it is recommended to work with your lawyer on this step. However, a word to the wise: I have met many people who had lawyers and still wound up with missing records. Always double check.
The best thing to do is just collect and submit all your records yourself with your initial application. However, if you are here reading this, mostly likely that ship has already sailed. So, on to the second best thing to do! Figure out which records are missing:
Here's how to find out what records are missing
If you are appealing, you can call your local Social Security office and get your entire case file on CD. Here's how to review your disability file. Reviewing your file is a great idea. You may learn some interesting things!
No matter what stage you are at, if you submit things right the first time, you will have less heartache in the end. Here's your handy-dandy guide to submitting your records
Clinical Evidence and Tests
According to the Social Security Ruling, there are four ways you can prove that your Chronic Fatigue Syndrome is a “medically determinable impairment.”
You do not need to prove all four. If you can get good documentation in one or two of these areas, that is enough to pass this step. Here are the four ways:
Medical Signs – Remember the step on Medical Signs & Symptoms? Pay special attention to the section on Medical Signs. If your doctor can document medical signs that can a great help to your case.
Laboratory Tests – This area can be a little tricky. Many of us with CFS show up normal on lab tests. Social Security even admits this in their ruling and says that lab tests are not the only thing to consider. Social Security does not require any specific lab tests, but they do mention several that may be considered helpful. Learn more about testing in this excellent article by Ken Casanova on Laboratory Tests and Evidence for Social Security CFS Claims. And here is an excellent article by Cort Johnson on Documenting CFS for Social Security Claims
Mental Limitations - Here is an interesting article on Neurological Testing for CFS. There is also a good section on neuropsychological testing in this article by Cort Johnson on Documenting CFS for Social Security Claims On the other hand, watch out for Neuropsychological Tests from insurance companies. Some disability lawyers recommend try to avoid practitioners that perform these tests for insurance companies.
Additional Signs and Findings – This part is a little vague, right? Social Security acknowledges that the signs and tests they list are “only examples.” They are not requiring specific tests and their list is not “all inclusive.” If your doctor has given you another kind of test that has shown something abnormal, great!
Please don't get sucked in by the lure of step six. Every step is equally important here. You cannot get on disability through testing alone. I am planning to come back soon and add more to this section. Suggestions and input are welcome and needed!
Get a Great Function Form
The Residual Functional Capacity form is a form you can ask your doctor to fill out about your ability to function. Many lawyers consider this form to be the single most important document in winning a disability case.
Here is a Physical Function Form. A physical function form should be signed by an MD. If it is filled out by a physician's assistant or nurse, request to have the MD co-sign it. This is important. The ideal function form is signed by a doctor you have been seeing "regularly and ongoingly" (regular visits for 3+ months).
If you also have mental health or cognitive problems, here is a Mental Function Form. The ideal Mental Function Form is signed by a psychiatrist or licensed psychologist. If this is not possible, a mental function form signed by an MD would still be acceptable. The ideal mental function form is signed by a psychiatrist or psychologist you have been seeing "regularly and ongoingly" (regular visits for 3+ months).
You can print out a function form yourself and bring it to you doctor. Try to set up a special appointment just for this form. Request an extended appointment if possible. Before asking your doctor, it's helpful if you put together info on your limitations
Please don't skip steps One, Two and Three. It can be really helpful if you can establish a good relationship with the right kind of doctor before asking them to fill out a function form.
While you are at it, do not skip step Six either. The first page of a physical function form will have a question that sounds like this: "Please state all clinical findings and any medical test results and/or laboratory results." This question is extremely important to Social Security. It is better to wait and do not give your doctor the function form until there is something to write down for this question.
You can help your doctor out here! Your doctor is not going to spend hours going through your medical records looking for every test you have taken. Your doctor is certainly not going to remember your test results off the top of their head. Make it simple for your doctor to do a good job with this form for you. Before you bring your doctor the function form, make a short list of any tests or clinical findings. List the name, doctor, lab, date, and results of the test. If you are listing medical signs, then list the name and date of the medical records and what medical signs are noted in those records. Give your doctor this list at the same time as you give them the function form. The list does not have to be long, but you do want your doctor to have something to write here.
Here's some ideas for What to do if your doc doesn't like paperwork
Don't forget to submit your completed form to Social Security. How to Submit. Keep a copy for yourself.
Document Other Conditions
Some people who have Chronic Fatigue Syndrome, don't get approved for Chronic Fatigue Syndrome. They get approved for a different diagnosis. Or they get approved for a combination of impairments.
If you have Fibromyalgia, it is recommended to try to get a diagnosis and testing by a rheumatologist. There are many good articles online about Fibromyalgia and Social Security. Also check out this excellent series of articles on Fibromyalgia and Social Security from attorney Scott Davis.
If you experience depression or anxiety, it can help your case to document this. You will want to show that you are receiving some kind of treatment and medical care for your mental health issues. Social Security does not like it when people do not treat their conditions. Learn more about Depression and Social Security. (On a related note: If you are also applying for or receiving Long Term Disability through your employer, be very careful before you write down anything about mental health. It's a good idea to ready your insurance policy and look online to research more about mental health clauses and Long Term Disability.)
Cognitive Impairments / Brain Disorders
Some people with CFS wind up getting approved for disability based on their problems with memory, focus, and concentration. Here is an interesting article on Neurological Testing for CFS. There is also a good section on neuropsychological testing in this article by Cort Johnson on Documenting CFS for Social Security Claims.
Lyme & Related Conditions
Social Security does not have any policies or listings for Lyme Disease. It is difficult to get approved for this condition. Although you can list Lyme Disease as one of your illness, your application may be more likely to be successful if you focus on trying to get approved for Chronic Fatigue Syndrome, Fibromyalgia, or another condition related to Lyme symptoms, such as Inflammatory Arthritis or disorders of the Musculoskeletal System. Lyme and Social Security.
Medical Source Statements
Initial Applications, Reconsiderations & Appeals
The disability process has several different stages. Someone can be approved at any stage. The process takes most people about two years. However, I have met people who were approved after one month, and I have met people who were approved after five years. These are the stages of most applications:
- How and Where to Get Started
- Find Out if You Are Eligible
- What Happens When You List a "Contact Person"
- The Best Way to Fill Out an Adult Function Form
- Notes on Unemployment Insurance
- When to Quit Your Job (and When Not To)
- Six Ways To Speed Up Your Application Decision
- Hire a Lawyer or Representative
- Prepare for Your Hearing
- What to expect the day of your hearing
- Four Ways to Speed Up Your Hearing Date
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After Getting Approved
Here is a list of Everything No One Ever Told Me After I Was Approved
I have been slowly collecting and updating this list, as I cannot find anywhere in the entire internet (or the entire universe) where this kind of list exists.
Please share this list with anyone else you know who is on benefits. It can save you a lot of money and a lot of heartache. If you have any ideas to improve or add to this list, please let me know.
What is this list & where does it come from?
Are these steps the same for SSI and SSDI?
Are these steps the same for Long Term Disability (through my employer)?
Where can I learn more about the Social Security ruling on CFS?
Why did someone at Social Security tell me I won’t get on for CFS?
Why are you calling it CFS? Are you in the dark ages?
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