TOUCHED BY LYME: Can you get disability benefits for Lyme disease?
Guest blogger Peter Burke, an attorney who focuses on disability law, summarizes some of the challenges faced by Lyme patients.
Lyme Disease and Disability Benefits: The Challenges
Lyme disease is a bacterial infection caused by a tick bite. Its symptoms are diverse and can cause physical disabilities, including heart disease, joint swelling, fatigue, and extreme pain, along with a variety of mental symptoms, including memory loss, attention and executive function deficits, anxiety, panic attacks, and delusions. Victims often consult with as many as 20 or 30 doctors before getting an accurate diagnosis. To complicate the problem, symptoms mimic a range of other mental and physical conditions and are often inconsistent, with exacerbations and remissions.
Qualifying for Government Disability Programs
Because of the great variety in symptoms and the difficulty obtaining a diagnosis, many people suffering from this debilitating disease are unable to work. However, for those same reasons, they face challenges when applying for disability benefits, whether SSI or SSDI, far beyond those faced by people with other more common disabilities.
The two disability programs, Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI) that the government has in place provide the disabled person with income and medical coverage, but have different threshold requirements. Applicants for SSI benefits must show that they have little or no financial resources, whereas SSDI recipients must have a work history and have paid into Social Security.
In order to qualify for Social Security Disability benefits, it is necessary to demonstrate disability due to a medical condition listed in Social Security’s “blue book,” which itemizes their recognized impairments. There is no specific listing for Lyme disease. Manifestations of the disease, however, might be shown to meet the qualifying requirements, such as the inability to walk or use your arms, damage to your heart, severe inflammatory arthritis, or one of various cognitive problems or mental disorders.
The RFC
Many people suffer from multiple symptoms that make it impossible to resume working, even if there is not a specific match to a blue book listing. In this situation, Social Security uses the Residual Functional Capacity (RFC) to determine the combination of impairments is sufficiently disabling to keep you from returning to work.
If they determine you are not physically capable of performing your usual job, they will consider whether you might be able to perform a sedentary one instead. Many patients with Lyme disease experience problems with balance, arthritis, fine motor skills, eyesight, and cognitive and emotional disturbances that would make even a less physically demanding job impossible. If you are able to demonstrate through the RFC that you are unable to do even a sedentary job, you should be qualified to receive benefits.
It is essential that you tell your doctors about all the symptoms and disabilities you are experiencing and make sure your medical records include a diagnosis, prognosis, and complete description of your limitations that result from Lyme disease, including physical, neurological, cognitive, and psychological impairments. Your medical records will be the primary source of information used in the RFC, and if you fail to mention any symptoms, limitations, or disabilities to your doctor, or if the doctor neglects to record them, they won’t be included.
Getting Help
Because Lyme disease doesn’t fit neatly into any category, is hard to diagnose, and comes with exacerbations and remissions, it can be difficult, frustrating, and time-consuming to wade through the red tape involved in the various stages of the application process. The language used in the application form is often vague and confusing. For example, what is the difference between a “marked” impairment and a “severe” one? If you aren’t able to make the distinction, your claim could be denied.
Many disability claimants attempting to get benefits on their own do end up being denied, which requires filing an appeal, causing the claim process to drag on for an uncomfortably long time. Hiring a lawyer who specializes in Social Security benefits can often ease and shorten the process and relieve a burden that you may not be able to handle alone in the face of the many physical and mental challenges associated with Lyme disease.
Peter H. Burke is a long term disability and Social Security Disability attorney with Burke Harvey, LLC.
I just wanted to add that there are paralegal services which can also help you file paperwork. I used Allsup, but there are many options, including hiring an attorney.
You really should get help, because the paperwork is overwhelming, and there are certain key phrases that must be used.
Something I don’t see written about much is the importance of the letter that the doctor writes. Most doctors think if they say a patient is too ill to work, then that is enough. But the letter has to have certain key findings written in a specific way. Make sure your attorney or paralegal group gives you some directions that you can take to your doctor. I’ve known people who hired an attorney and still got denied because the physician did not adhere to this strict written format.
I was able to become eligible for disability back in 1998, when it was impossible for me to work anymore. I think on of the most important things to help becoming eligible for disability is to be very specific on the application. This can be very hard for us Lymies-because it requires a great deal of highly focused information from the applicant.
Somehow my application and the interviews with the psychologist and home visit to assess my condition went very well. The psychologist seemed a bit “snippy” and arrogant, apparently doubting the severity of my condition. At the time I was a practicing, licensed psychotherapist- and let her know that since she lived in the area in which I was infected, she might easily be sitting in the chair that I was occupying.
Very good answer. Once bitten twice shy and change her attitude. I’m trying to help a friend in California with this despicable disease. She exhausted all her resources and waiting now for ssdi. Is there any other source of monetary to get her by to help pay her bills, visit her doctor put gas in her car. I hear California has certain programs that do assist people with certain disabilities of this nature.
I have all the symptoms and effects listed for lyme disease, including the growing “bullseye rash”, but because of my poverty, I can not seek medical help. Will the social security office provide me a doctor?
I have a diagnosis of Lyme disease , i was diagnosed last year. I have been experiencing problems, i am debating seeking medical care again. I have issues now with my arms , i beleive are now nerve damaged. Loss of short term memory , concentration issues, easily tempered , depression, blurry vision , mind u i have always had 20/20 …not sure if i could qualify for disability.
The key to winning a disability claim is documented medical evidence. You must continue to try and get treated -especially if your symptoms are continuing! Having a confirmed diagnosis is a BIG PLUS! It is a long process, so go ahead and file, and seek medical care. As of 2017 (when I finally got approved) Lyme IS now in the SSDI bluebook. However it was the documentation of all the complications (and gross negligence of supposed health professionals) that got me classified into three disability categories (there are hundreds of recognized illnesses AND combinations of symptoms/illness they look at). Many people won’t win with just the Lyme diagnosis, but all the combinations of problems Lyme causes are what adds up to disability.
Fight for your treatment and don’t let them sweep you under the rug or foist you off onto anti-depressants and tell you its all in your head! My SSD Judge specifically mentioned that he looked at whether I had a history of “mental illness.” I luckily had many (snide) comments written in my records by the fake doctors (“she refuses to take anti-depressants, claiming if we could find the source of her physical health problems, her “depression” would go away”).
Any tests you get, request copies of – this makes it easier in the long run to have your records. There is a great website DisabilitySecrets, that outlines how to do it. It is a process that takes several years. You don’t need a lawyer, but know that SS automatically rejects you and then you have to (timely) file the request for a hearing, and all the other paperwork/forms they ask for (which can be down-loaded from their site.
The POS lawyer I had, I discovered was NOT forwarding my records to SS – therefore prolonging my case so he could get more money (disability lawyers get a percentage of your BACK PAY – even if they drop your case at the last minute!!!). Luckily, I documented all THAT stuff too (kept copies of emails), and the Judge was VERY displeased with the attorney and promised that guy wouldn’t get a dime.
The sudden vision loss and “easily tempered” as you put it, is a Bartonella symptom. Even though I lost 70% of vision in my left eye, SS didn’t consider THAT a disability because it could be “corrected” with glasses. It is a serious symptom, though, and even if you at least go the herbal route, don’t let it go; it means optic nerve compression/swelling…
Good Luck!
Thank you, I have a close friend whom is just amazing, she was sick long before they found out it was Lyme Disease; I am going to help her apply for SSDI (she worked since college) under RFL–is Allsup still available? She has barely any family left, so I am worried and want to help her, she gave notice to work this Friday as she is too sick to work anymore. This person is beautiful inside and out, so please any advice you can give would be great!
Thank you for posting this.
Although I was diagnosed with Lyme disease, I did not attempt to apply for disability for Lyme disease. I just felt it would be a long impossible road.
I was also diagnosed with Chronic Fatigue Syndrome, and most of what I wrote on my disability application, and most of the medical records and other materials I sent to Social Security focused on Chronic Fatigue Syndrome (I know it is called CFS/ME now…. but Social Security still calls it Chronic Fatigue Syndrome!)
Of course every case is different, but Social Security has a special ruling for CFS/ME, and it does not recognize Lyme Disease. There is also a special ruling for Fibro.
I have had CFS/ME for more than 20 years and have been homebound for most of this time. I’ve been putting together some information for other people who need help with caregivers, Medicaid, social security disability. I am trying to offer free help to others who are poor and disabled. I always happy to write with anyone who is in need of help.
https://howtogeton.wordpress.com/2017/01/24/how-to-get-on/
bad link! try: https://howtogeton.wordpress.com/welcome/