The Sleepy Girl Guide to Getting Disability for Lyme Disease

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Artwork by Elizabeth D’Angelo

If anyone ever tells you that you can’t get approved for Social Security disability if you have Lyme Disease, or that you can’t get approved in less than two years, just tell them to go talk to Daisy, Sweet Pea, Jasmine and Poppy.

Sweet Pea Got Approved in Four Months

Sweet Pea got approved for Lyme Disease, Encephalopathy, chronic head and neck pain, and cognitive difficulties.

Jasmine Got Approved in Six Months 

Jasmine had Lyme Disease. She got approved for Chronic Fatigue Syndrome.

Buttercup Got Approved in Six Months

Buttercup was diagnosed with Lyme Disease, Chronic Fatigue, parasympathetic and autonomic nervous system disorders, Fibromyalgia, and multiple chemical sensitivities. Her approval letter did not say which conditions she was approved for.

Poppy Got Approved in Ten Months

Poppy had Lyme Disease. She got approved for Depression, Chronic Fatigue Syndrome, and Fibromyalgia.

Daisy Got Approved with a Doctor’s Letter

Daisy had Lyme Disease. She got approved for Fibromyalgia, Depressive Disorder, Anxiety Disorder, Cardiac Arrhythmia, Bursitis, Orthostasis, and Chronic Fatigue.

If Daisy, Sweet Pea, Jasmine and Poppy can do it, you can too! Here’s how:

🌺 Getting Started

If you have not yet applied, please take a look here for info on how to apply and special things you can do to help your application at the beginning.

🌺 After You Get Started

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.

🌺 Make Sure You Have the Right Kind of Doc

Many Lyme Literate Doctors are Naturopaths and this can cause a problem for disability. Please make sure you have at least one doctor who supports your disability application and is an MD or another kind of acceptable medical source. A doctor who is a “Lyme Literate Doctor” is great, but not required. Realistically many people cannot afford, or cannot access, This kind of doctor. Any doctor who supports you and supports your application can help you.

Online Support

🌺 Social Services Connections for Lyme Disease is a great Facebook group for Lymies seeking disability and other services.

🌺 Scientific Research

Some people suggest that if Lyme is your primary diagnosis it may be helpful to include with your application some peer-reviewed information about Chronic Lyme. Sending this type of information is unusual for Social Security application, however Lyme is an unusual situation because there are no Social Security guidelines. If you decide to enclose something like this, I would suggest finding one or two reports that are relevant to your medical evidence and come from well-established, peer-reviewed scientific sources.

🌺 Throw Everything at It

Unfortunately, Social Security does not have any listings or rulings for Lyme Disease. Fortunately, many people with Lyme Disease get approved anyway! It is recommended to include and document all conditions that affect your ability to function in any way. Common other conditions for Lymies: Chronic Fatigue Syndrome, Fibromyalgia, Neurological Disorders, Cardiovascular / Heart problems, Arthritis, Inflammatory Bowel Disease, and Mental Disorders.

🌺 Include Mental Health

Especially include mental health, depression and psychological struggles, even if these are not your primary condition. Sometimes people with Lyme disease are approved based on mental health, especially if Lyme has caused cognitive or neurological problems.

🌺 Mental Health Drawbacks

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.

🌺 Doctor Forms and Letters

It can be a great help to your case if your doctor can fill out an RFC function form or a Doctor’s Letter. If your doctor is willing to write a letter for you, please take a look at How Lotus Got a GREAT Doctor’s Letter for Lyme Disease. You may also find Connie’s Lyme Disease Letter to be very helpful.

🌺 Lawyers & Representatives

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. From what I have seen, when Lyme patients don’t take steps to help their applications 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. How to Get a Lawyer or How to Not Get a Lawyer

🌺 Learn Everything You Can

Don’t expect that your lawyer will tell you what you need to know. Please read everything on this page and learn as much as you can for yourself. Patty had a great Lyme Literate Doctor who supported her application, but her lawyer never told her a few important things and her doctor’s records were ignored: How Patty’s Lawyer Never Told Her What She Needed to Know

🌺 Describing Lyme

Whenever you speak with your doctor or fill out a disability form, it’s important to describe how your symptoms are affecting your ability to work and function. You may find it helpful to read this article on applying for disability with Lyme or this article on applying for disability with Lyme. Also please take a look at these tips for working with your doctor and how to have great doctor visits that create great records.

🌺 Federal court case

There was a recent federal court case where disability benefits were awarded based on Lyme Disease and Bipolar Disorder. This case probably won’t be helpful to most people applying, but there are a few specific circumstances where it could be of some assistance to someone who has Lyme testing and is appealing their case. If you are heading towards a hearing or appeals council, you can try showing your lawyer the federal court ruling to see if it might be helpful in any way.

🌺 Other conditions

If you have been diagnosed with more than one condition (and haven’t we all by now?), you might consider collecting more evidence on some of your other conditions to strengthen your application.

I have never met anyone who was approve for disability based on only Lyme Disease. Most people are approved for the conditions that are caused by Lyme or for  a combination of several different impairments.

  • Neurological Problems – Many people report success after getting neurological or neuropsychiatric testing. Sadly, these tests are often not covered by insurance. If you are experiencing significant problems with memory, concentration and focus, you can speak with your doctor about getting a referral for testing.
  • Mental Illness – Seeing a licensed psychiatrist or psychologist can make a big difference in mental health claims. If you are experiencing depression or other mental health symptoms, it may be a great help to your case if you begin seeing a psychiatrist or psychologist. (A counselor or therapist is not the same).

🌺 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 after you have been diagnosed with Lyme Disease. Putting that bit of extra effort into your application can make a big difference. Here are a few super cool success stories from super cool people just like you!

🌺 Updated March 2017 by Lily Silver

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