If you have severe Myalgic Encephalomyelitis or Chronic Fatigue Syndrome 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.
🍎 Getting Started
Many people with Myalgic Encephalomyelitis decide to “wait and see what happens” instead of applying for help 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. If you are seriously ill but on the fence about applying, perhaps it will help to try reading Bluebell’s story.
If you have not yet applied, please take a look here for info on how to apply, how to figure out if you are eligible, and special things you can do to help your application at the beginning.
If you have already applied and are waiting for a decision or a hearing, it’s never too late to make a big difference. Please take a look here for great things to do while you wait.
If the rest of this article is making your head swim and you don’t want to read it all, here’s a Cheat Sheet with just the most important parts.
🍎 What’s Wrong with ME?
Many of us dislike the term “Chronic Fatigue Syndrome,” and with plenty of good reason. However, if I were applying for disability tomorrow, I would write down “Chronic Fatigue Syndrome” on my application, I would use this phrase every time I spoke with a Social Security doctor or employee, and I would confirm that my doctor had listed this diagnosis in my medical records.
This is the terminology Social Security will recognize, and there is a special ruling for Chronic Fatigue Syndrome that may be able to help you get approved.
If your doctor has not diagnosed you with Chronic Fatigue Syndrome, don’t worry. As long as you have been diagnosed with something and you can show that this something is disabling, you can get approved. Sometimes people with ME wind up getting approved for depression, or for neurological and cognitive problems, or for fibromyalgia or for a combination of other impairments.
If your doctor is generally supportive, and willing to help you, but not very familiar with Chronic Fatigue Syndrome, you could try showing them the Social Security guidelines on diagnosing Chronic Fatigue Syndrome if you feel this might be helpful.
🍎 Finding the Right Doc
Social Security is rather particular about what type of doctor they would like you to see. If all of your physical health doctors are MDs and all of your mental health doctors are licensed psychologists or psychiatrists, you don’t have to worry about this. If you have a different kind of doctor, you can still get approved, but it would be a great idea to learn a few of the Social Security rules for doctors.
When you are looking for a doctor, it may be helpful to keep in mind that there is often a big difference between a doctor who is great at treatment (believes you can get better and focused on getting you healthy), and a doctor who is great at services (believes you are disabled and is helpful with documenting your disability). If your doctor does not believe you are disabled, it may be very difficult and, sometimes, impossible to get approved. Here are some ideas for How to Talk to Your Doctor about Your Social Security Application.
Don’t worry if you cannot afford or reach a doctor who has special knowledge of Myalgic Encephalomyelitis. A doctor with knowledge in this area may be helpful, but this is not required. Any doctor who believes you are disabled and is willing to help you document your condition can help you win your case. If you would like to try to find a doctor with knowledge of ME, check out this excellent MEAction Doctor List.
You can also help your case by asking your doctor to refer you to a medical specialist in your local area. For example: A rheumatologists for fibromyalgia, a neurologist for cognitive problems, or a psychologist for mental health.
🍎 Working with Your Doc
Once you’ve found a doc who is a good match for you, you may wish to check out these ideas for great doctor visits and great ways your doctor can help your application: How to Work with Your Doctor
One of the most helpful documents you can get is an RFC function form. This link includes a special function form you can use to document Chronic Fatigue Syndrome, plus some ideas for how to get a great one.
Some people request a letter instead of a function form. If you are planning to request a letter from your doctor please take a look here: How to Get a Great Letter from Your Doc there are links to several sample letters that have helped people get approved for Chronic Fatigue Syndrome.
🍎 Documenting Myalgic Encephalomyelitis
Social Security has a special Social Security Ruling 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. Just in case you are feeling tempted to skip it, I am going to post it right here: How to Prove Functioning
Many of this have lived through the experience of not being believed or people thinking we were not really sick. I’ve met a lot of people who get very focused on trying to get a lot of lab tests to prove they really have Chronic Fatigue Syndrome. Lab tests can be great, however, you cannot get on disability by proving you have a certain diagnosis. You can only get on disability by proving that your symptoms are so bad they keep you from being able to work. Learn a bit more about this: How to “Prove” Chronic Fatigue Syndrome
I am assembling a list of common tests people use in disability cases. Some tests are directly for Myalgic Encephalomyelitis or Chronic Fatigue Syndrome, but many are for conditions caused by or related to your main illness. This page is a work-in-progress and I would appreciate your insights and input: How to Be Tested
🍎 Documenting Other Conditions
Most people are approved for a combination of impairments. It is recommended to include and document all conditions that affect your ability to function in any way. List all your diagnoses and make sure to give full contact information for every doctor, lab test, hospital and practitioner you have been to since becoming sick.
Common other conditions include: Fibromyalgia, Neurological Disorders / Cognitive Problems, Arthritis, Inflammatory Bowel Disease, and Mental Disorders. Disability Secrets has an excellent library of articles on how to get approved for hundreds of different conditions. Here’s an article on How to Get Disability for Lyme Disease.
Mental Health can be very important in disability applications for Chronic Fatigue Syndrome. I have noticed that some people really do not want to list their mental health diagnosis on their applications and do not want to visit mental health doctors. I totally understand why people feel this way, and I totally support whatever you decide, but I do want to say one thing: If you leave out mental health, you may be hurting your chances of getting approved.
I have met quite a few people who got approved for disability based on depression or based on a combination of Chronic Fatigue Syndrome and mental health. If you do decide to list a mental health diagnosis, it will be a big help to your application if you can begin regularly seeing a licensed psychologist or psychiatrist (not a counselor or therapist).
Even though I just told you to include mental health, I should also let you know that there are two drawbacks: 1) If you are also applying for disability through your employer, mental health may cause problems, please read more. 2) If mental health is one of the conditions you are approved for, Social Security will expect you to stay in mental health treatment for as long as you are on disability.
🍎 How to Have a Great Application No Matter What
It’s never too late to improve your application. No matter where you are or what has happened up until this moment, there are a TON of things you can do to greatly improve your chances of winning. If you are not well, you can try a few minutes each day or see if a loved one can assist you.
There area also a few things you can do in the other direction. Try not to do these things: How to Kill Your Social Security Application.
You can also hire a lawyer to help you out. I have mixed feelings about lawyers. Lawyers can be great, but when people hire a lawyer, a lot of times they just leave everything up to the lawyer and stop taking steps themselves. This does not always work out so well and sometimes leads to regrets. 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. How to Get a Lawyer or How to Not Get a Lawyer.
Finally, here’s some ideas for financial survival, and survival in general, while you apply: How to Make Life a Little Easier While You Apply
🍎 Keep Hope Alive
Don’t give up hope! Just get scrappy and get creative and get persistent. It is totally possible to get on disability for Chronic Fatigue Syndrome and related conditions. Here are a few super cool success stories from super cool people just like you!
Lily Silver writes for the website “How to Get On.” She is homebound and partially bedridden with CFS / ME.
#MEAction recognizes and celebrates Pride Month! As a community that welcomes and encompasses all, this Pride Month, we asked members of our LGBTQIA+ community to share what Pride means to them and what they have learned from this movement that they bring with them to the ME movement. Here are a few responses: Kristina Osobka-Stier