The Sleepy Girl Guide to Social Security Disability

A renegade disability guide for people with CFS/ME and related conditions

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    By Lily Silver
    Artwork by Olivia Colleen Smith

    If you have severe CFS/ME and you are too sick to continue working, applying for disability may be one of the smartest, bravest, and best things you can do to help yourself. It can bring stability, security, medical care and peace of mind into your future.

    It can also be a great help to your loved ones who may be worried about you or may be trying to care for you without support.

    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.

    How to Get Started

    First steps, how to apply, and how to answer questions. Many of us with CFS/ME decide to "wait and see what happens" instead of applying for when we first need help.

    Disability can be a long and winding road. If you start taking steps now, someday you may be very glad you did. The link above includes an overview of how to get started plus tips for answering questions.

    How to Get Yourself the Right Doctor

    It is very important that your doctor is an MD or another kind of "acceptable medical source." Some CFS/ME specialists are Naturopaths or other types of practitioners. If you have mental health issues, it can be a great help to start seeing a psychiatrist or psychologist - not counselor or therapist.

    It's also incredibly helpful to talk to your doctor and ask for their support. The link above has more details on how to ask your doctor for support. Please see the right kind of doctor now to avoid heartbreak later.

    How to Work with Your Doctor

    If you are not able to afford or reach a CFS/ME specialist, you can still get approved. If you are able to afford and reach a CFS/ME specialist, you can still get denied.

    A specialist is great, but having a doctor who supports your application and is willing to work with you is the most important thing. The link above includes some sample doctor letters for CFS/ME and special function forms for CFS/ME.

    Include It All

    Many people with Chronic Fatigue Syndrome, do not get approved for Chronic Fatigue Syndrome. They get approved for depression, or for another condition, or for a combination of impairments.

    It is recommended to include and document all conditions that affect your ability to function in any way. Common other conditions: Fibromyalgia, Neurological Disorders, Cardiovascular / Heart problems, Arthritis, Inflammatory Bowel Disease, and Mental Disorders.

    Social Security Ruling for Chronic Fatigue Syndrome

    Social Security has a special ruling just for Chronic Fatigue Syndrome! You can use it. It can help.

    There are four key components in the ruling: Signs & Symptoms, Diagnosis, Medical Evidence and Functioning. Don't skip that last one. People love to skip the last one. The link above includes an overview of each area of this ruling.

    How to Get a Lawyer or How to Not Get a Lawyer

    I have mixed feelings about lawyers. When you hire a lawyer, there can be a temptation to just leave everything up to the lawyer instead of taking steps to help your applications yourself. From what I have seen, when CFS/ME patients don’t take steps themselves, it usually takes 2-3 years to get approved and it doesn’t always work.

    So, I guess I am saying: I think the best thing to do is hire a lawyer if you want to, but don’t give up hope that you are the best person to make a difference. The link above includes some tips for working with your lawyer, plus where to find one.

    How to “Prove” You Have CFS/ME

    Many of us with CFS/ME have lived through the experience of no one believing us. It's easy to get very focused on trying to prove we really have CFS/ME. This can be helpful, but the truth is, at the end of the day, your diagnosis really does not matter that much. You can't get approved for having a diagnosis.

    How to Create a Great Application No Matter What

    If I can't get approved for having a diagnosis, how can I get approved? Good question. You can get approved by showing that your impairment is so severe that it keeps you from being able to work and function.

    No matter what your diagnosis is, there are a TON of things you can do to greatly improve your chances. The link above includes a looooong list with a million ideas.

    "I Want to Read Less"

    If all of the above is too much reading for you, here's a
    Cheat Sheet with just the most important parts.


    "I Want to Read More"

    OK. You asked for it:

Recent Updates

  1. More updates! Lots of them!