Applying for Disability

Resources & tips to help navigate a tough time (US readers)

Can I sail through the changin' ocean tides?
Can I handle the seasons of my life?

Landslide—Fleetwood Mac

I’m sorry this has happened to you. To us. I was nearly 20 years into my career as an environmental scientist with the US EPA when I progressed from mild to moderate ME and could no longer work. My dream was to retire from EPA and take a smaller role in the US National Park Service. To live, work and play in beautiful places where my husband and I could hike, kayak and bike.

But sometimes the seasons of our life change more quickly than we anticipate.

Take time to grieve. Understand that this is a monumental shift, and you deserve some space to process it. Then, make a clear, strategic plan and be prepared to play the long game—buckle up!

I’ve tried to compile a comprehensive list of resources for you to conveniently refer to at your own pace. I’ve also included a template doctor’s note via google docs, so you can customize it. I’ll share some of the steps I took, but the experts in the resources below have far more wisdom to share. I was approved for long term disability (disability retirement) through my employer as well as SSDI, on my first try, and I used most of these resources to guide me.

This post will discuss disability in the US. I’m not an expert on this subject. The disability experience varies widely and there are a lot of variables that will dictate individual outcomes. I won’t cover the decision to retain an attorney, which is a personal preference. I will share that I did not have an attorney for SSDI, but did for LTD.

Council for Disability Awareness: Prevention, Financial Planning, Resources and Information (disabilitycanhappen.org)

My opinion is that you increase your odds of success by spending time up front developing your plan and building your medical record. I spent about 9 months before applying, slowly making my way through the following three steps. That was an option I was fortunate to have but realize others may not.

Lots of this information and much more is covered in the resources I’ve shared below. Take your time to go through everything, I often find one resource “clicks” with me better than others.

Step 1

If you have the luxury of time, use it. If you’ve been struggling to work and you think there’s a good chance you’ll be unable to keep going, it’s time to start getting your ducks in a row. Applying for disability takes a lot of time and energy; it’s best to get started before you get worse. You can always decide to not apply but it’s much harder to get through this at your worst and in a rush to secure your finances. I also found a long on-ramp helpful in coming to terms with this reality.

Start stashing a little extra savings if you’re able, you may need to use unpaid time off for a while. If you utilize the Family and Medical Leave Act, FMLA, you will be entitled to up to 12 weeks of leave, which can be a mix of paid and unpaid leave.

Step 2*

Make a plan for how you’re going to leave work while educating yourself on your options and rights. Find out if your employer has a long-term disability policy and what the terms dictate. It might be incredibly important that you do not immediately resign when you decide to apply for disability. If you leave your current employer, you might be leaving your long-term disability rights as well. In most cases, you must apply for SSDI in order to apply for long-term disability (LTD); so, there’s a possibility that you have earned the right to both.

Here’s where some tricky time traveling starts if you’re applying for both…ugh. Usually, you must demonstrate on your LTD application that you have applied for SSDI (just applied, no decision from SSA needed at this point). But SSDI can immediately disqualify you if you’ve been working for the past year-ish. But I just said to NOT resign from your job. So, you have to chart a path forward using all your sick leave, vacation leave, paid FMLA and unpaid FMLA. All of that time off, whether it’s paid or unpaid leave, is considered “not working” by SSA. You can be “employed” but you need to be not working! Having documented leaves of absence leading up to your LTD and SSDI applications can provide evidence of your inability to work.

While you’re determining your exit strategy, you should also be familiarizing yourself with the disability application process. I found it helpful to find examples of the application online in advance and to prepare the material ahead of time (I applied online). It’s also critical to become really familiar with the SSA Ruling on “CFS”. This document will become your guide throughout this process: Social Security Ruling, SSR 14–1p; Titles II and XVI: Evaluating Claims Involving Chronic Fatigue Syndrome (CFS).

There’s also a handy fact sheet from SSA called Providing Medical Evidence for Individuals with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

*Obviously, this information depends on your employment circumstances and history. If you’re not employed or you don’t have enough social security work credits, you would apply for SSI. Also, this information may not be relevant if your employment doesn’t have a LTD policy.

Step 3

Documentation, documentation, documentation. Get your hands on as many of your medical records as possible, including appointment notes. Typically, SSA only considers evidence from the past couple years; however, I included medical records that demonstrated a longitudinal trend. You’ll be told by SSA that they contact all the doctors you list on your application for medical records. They will, but you can also take opportunities to provide those records (or the most important ones). Anecdotally, many people report that the medical records SSA ultimately gathers do not represent their full record. I tried to avoid this by providing records myself.

Some people have indicated that their online SSDI application included a section to attach documents, but I didn’t find that to be the case. I made multiple copies of my records, including test results, appointment notes, and letters of support from doctors. One copy was sent to the person assigned to my case in my state office (after applying, you should be notified of who that person is). Another copy was sent when I returned my “functional capacity” form—received in the mail after my application was submitted. A third copy was made for the SSA physician I was sent to during the medical consideration phase (not everyone is sent to a SSA doctor but be prepared for that possibility). Two take aways here. First, make sure you list every doctor whose records are relevant on your application. Second, don’t be afraid to submit medical records yourself, but always include your case number on a cover sheet.

A quick note about the functional capacity form. This form is super important! My understanding is that SSA puts a lot of weight on it. It’s critical that you clearly represent all your limitations on the form. I filled it out from the perspective of my worst day, but also made it very clear that I experience considerable variability and unpredictable symptom swings—unless it is the case, don’t state that you’re 100% bedbound and can’t do anything at all, it raises eyebrows. The unpredictable nature of our limitations is good to stress. It’s also helpful to explain the repercussions of doing certain things. My husband filled out a “third party” functional capacity form and we were mindful to use similar language to avoid any window of opportunity by the reviewer to interpret inconsistencies.

This step, for me, also included identifying gaps in my medical records or in my overall diagnosis. I found it important and helpful to start a frank conversation with my doctors about disability. The appointment notes your doctor records might be critical, so try to establish a common understanding of severity and functional capacity. Also consider discussing which medical records are the most important. If able, share with your doctors which records you would like them to send in response to SSA’s request—don’t leave it to chance! Think about whether or not you need to build time into your timeline for additional medical appointments and tests. As you know, that can take a lot of time, so you might need to start doing this before you start your leave of absences from work.

For many, the 2-day CPET is a gold standard line of evidence for disability; however, we don’t all have access to it (as properly conducted for ME), or we are too severe to risk doing the test. I personally didn’t want to risk deterioration by doing a CPET but felt I needed another strong line of evidence.

I decided to pursue a neuropsychological test by someone well versed in post viral disease, because my cognitive symptoms were severe. Cognitive testing is accepted as an objective measure of impairment in function by the SSA. I reached out to Gudrun Lange, a clinical neuropsychologist who is well known for her work in ME. Due to my inability to travel, she recommended the Cognitive Assessment Group based on their telehealth options and evidence-based position on ME/CFS. This wasn’t an inexpensive test, but I considered it to be an important investment both for understanding my cognitive decline and for disability determination.

I was able to then pair my neuropsychological test results and diagnosis with an evaluation I had done by Dr. Mark Zinn of the NeuroCognitive Research Institute. Below, I’ve shared my medical letter of support, and you’ll see how the results of these two tests were presented as objective evidence of neurocognitive dysfunction. This was a quantified and objective measure of “brain fog”. Remember, SSA wants evidence, not just symptoms. Dr. Zinn is even able to demonstrate changes in neuronal networks from PEM. In my opinion, if the CPET is not an option for you but you’re still able to safely travel, Dr. Zinn might be the evaluation worth traveling for. The report he provides is outstanding, here’s an example.

These are just my examples of how you can strengthen your medical record. Maybe for you it’s a tilt table test to demonstrate orthostatic intolerance. Or a natural killer cell function test, which is an objective measure of ME. I referred to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management and MECFS Clinician Coalition Testing Recommendations a lot in determining the strength of my records.

Here’s a quick 13-minute video that sheds light on some common reasons claims for ME/CFS are denied. My opinion—the attorney providing the information in this video often states that there simply aren’t objective tests, or lines of evidence, for ME/CFS. Wrong! Even the SSA ruling walks through various tests they consider. We have the diagnostic and testing recommendations above and those tests are valid, objective evidence. This video, however, provides an important “inside” perspective. Think through your own documentation as you listen to these reasons:

“Eight Common Reasons Why ME/CFS Long-Term Disability Claims Get Denied”

The three steps above are covered in much more detail in the following webinar from Open Medicine Foundation.

“The Nuts & Bolts of Applying for Disability Benefits in the U.S. with ME/CFS or Long COVID”

This webinar features OMF's Founder & CEO, Linda Tannenbaum, Disability Benefits Attorney Barbara Comerford, and Neuropsychologist Gudrun Lange, Ph.D. 

In this informative session, these esteemed experts will share invaluable insights and practical tips to guide you or your loved ones through the process of applying for disability benefits in the US. Here’s a summary sheet of this webinar.

If you’d rather be able to read through some additional information and guidance, you absolutely need to check out the Sleepy Girl Guide! This is really an authoritative guide and covers everything in detail.

The Sleepy Girl Guide to Social Security Disability

One of the resources on the Sleepy Girl Guide are examples of letters of support from doctors. I leaned heavily on those examples to collaborate with my doctor on my own letter. As you’ll see, my letter ended up being fairly long and detailed. We strategically aligned my letter with the SSA Ruling for ease of review and to ensure we hit on every component of their criteria.

Medical Letter of Support Template and Example

The Massachusetts ME/CFS & FM Association also has a wonderful guidebook that walks you through all the steps of applying.

MassME: How to Apply for Social Security Disability Benefits if you Have Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

And they have a companion webinar featuring the author of their guidebook.

“Applying for Social Security Benefits if You Have ME/CFS or Fibromyalgia”

This webinar tackles when and how to apply for benefits, qualification requirements, the application process, and how to medically-document your disability – as well as how to optimize your chances for approval.

Another great resource comes from Solve ME. Presented on April 20, 2020, this online education workshop includes a conversation between legal and medical experts in the field as they share their advice on applying, appealing, and documenting your case for disability insurance with ME/CFS. Board Certified Patient Advocate, Sharon Stevenson, DVM, PhD, moderates with roundtable speakers: Lucinda Bateman, MD (Bateman Horne Center), Christopher Snell, PhD (Workwell Foundation) and Moselle C. Leland (Law Offices of Judith S. Leland).

Again, if you prefer something in writing and want to get out your highlighters and post-it notes, I highly recommend this article (Podell, Richard, Dimmock, Mary E., and Comerford, Barbara B., 1 Jan. 2020 : 339 – 352). This article, which includes guest editor Amy Mooney MS OTR/L, covers it all!

Documenting disability in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

Section 5.4 of this article discusses the functional capacity tests typically performed and/or used by SSA during consideration. I recommend working with your doctor closely to document your functional capacity in a safe way. If you’re sent to a SSA physician, as I was, it can be difficult to address this due to disease variability and PEM. When I attended my SSA appointment, I did so in my wheelchair and came with documentation about PEM and my own doctor’s evaluation. I got lucky. My SSA physician immediately understood that a functional evaluation could make me worse temporarily or permanently and she didn’t perform any tests—she documented my inability to do those tests and that’s a great outcome. As with every step in this process, you have better odds of success by understanding the process up front and anticipating those areas SSA will be critical.

A few more resources, including disability specifically for Long Covid, can be found on the Bateman Horne Center’s site, here.

I know this is a lot, especially in combination with my example letter of medical support, but I found this terrible process a little easier to handle by being prepared and hope to pass that on. I think my preparation and time spent up front may have been the greatest factor in my approval, without an attorney, on my first try. The entire process took about a year, and I was so relieved and grateful that I didn’t have to spend another year appealing.

My experience, unfortunately, seems to be the exception to the rule. The reality is, there are a lot of forces out of our control when we apply. We can think we’re doing everything right and still get denied. Here’s an important experience to read, from the Sleepy Girl Guide, that covers just such a story: “How Patty’s Lawyer Never Told Her What She Needed to Know”. What really stands out to me about this story is the cautionary tale of the functional medicine doctor. Make sure you understand the SSA rules for applying, this one could be a devastating set back!

There are so many pitfalls, and they are there by design. All we can do is understand what they are and try to anticipate them. I hope this collection of resources is something you return to often as you pace through this terrible, no-good, unnecessarily humiliating process.

You have a right to benefits that allow you to live under a roof, put food on the table, and pay your bills—because sickness and disability happens.