Many Long Term Disability policies have special rules that put a cap on certain conditions. After two years they will cut you off!
In Dahlia’s case, her policy limited mental illness but did not limit chronic fatigue syndrome. When the company tried to say that her condition was all mental, she made some smart choices to prove them wrong and keep her disability payments.
Dahlia’s Story
I was able to get on Social Security, but I was denied Long Term Disability because my insurance policy has a two-year limit for mental health conditions.
All of this started because I went to a local neuropsychologist who did not understand the cognitive impact of ME/CFS. His interpretation of the results focused entirely on depression, anxiety, and post traumatic stress disorder.
Social Security accepted this and approved my claim because they don’t care if the disability is mental or physical. I won my case mostly due to extensive neuropsych testing showing brain damage after my mold exposure.
Long Term Disability used these same results against me and denied my claim for physical disability benefits stating my condition was mental not physical.
I had to appeal, hire an attorney that specialized in ME/CFS, and repeat all of my testing with expert witness types that specialized in ME/CFS all to prove my disability was truly physical and not mental.
Neuropsychological Testing
When I first applied, I asked my primary care doc and my psychologist about testing options to show what was going wrong in my brain. They suggested a neuropsych exam and told me who to go see. Social security makes no distinction between physical and mental disability so this test worked to win Social Security.
However, my LTD policy does make a distinction (Please read your policy. They are all different.) If your policy is like mine, I would not suggest wasting time and money on a local neuropsych because it may backfire like it did on me.
For my appeal, I saw Sheila Bastien in CA, she spent her career studying cognitive issues with multiple chemical sensitivities, fibromyalgia, and CFS. Learn more about How to Find a Neuropsychologist.
CPET
For my first application, I had a one-day CPET done locally. The results hurt me more than helped. I was approved for Social Security, but denied LTD. To appeal the Long Term Disability, I had a two-day test at a facility that specialized in testing for ME/CFS. It is well worth it to have the test done at WorkWell the report quality. Learn more about How Dahlia Got a CPET and learn more about The Pros and Cons of Getting a CPET
Lawyer
I thought the Workwell report would be enough to show that I am physically disabled not mentally disabled. Even though my Workwell report was rock solid, the insurance company still fought me.
Workwell called to tell me my disability company was requesting raw data from my testing. They said I needed to get an attorney because they’d seen other cases get really ugly when this happened. They said I am most definitely disabled and they wanted me to win so they gave me the names of the attorneys that had been the most helpful for other clients. I am so thankful for them. I hired attorney Stuart Sandhaus. A few more recommended LTD lawyers are on this page.
Brain Scan
I also get SPECT scan showing the issue was due to brain damage not just anxiety, depression, and Post Traumatic Stress Disorder.
Other Testing
I also saw environmental and occupational medicine doc, another rheumatologist, and had an ability-to-work evaluation done.
Lesson Learned
If your LTD policy is similar to mine, don’t mess around with local providers that don’t know how to interpret the results properly due to a poor understanding of how ME/CFS causes cognitive impairment. If I had not done testing locally first it might have been easier to win. I had to repeat everything with people that understand this damn illness to win my case.
In the end, I won both my LTD and Social Security. I am still on LTD now, and after four years, the insurance company has finally backed off making me jump through so many hoops. Thank goodness.
Tools for Troublemakers
How to Get Approved for Long Term Disability
How to Get Long Term Disability for ME and Chronic Fatigue Syndrome
Thanks for Reading
🌸 Art on this page by Robin Mead and Elizabeth D’Angelo.
🌸 Page Updated: 10/1/19
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How to Get On 
Thank you so much for the amazing information. I applied in April, and today heard from my disability examiner that they decided on my case, and to be looking in the mail. She wasn’t allowed to tell me over the phone though, but said everything looked good. I told her I still had documentation to send, and she said no need, I’m all squared away.
I sent my disability examiner all my important records from past few years relating to my conditions on a CD. She told me they reviewed it a few weeks ago. She said I could call my local office maybe they could me the decision. I did, and was told that my case is in “quality control” right now. That it could take up to 30 days to get the letter. She said it’s looking good though. Thank you so much.
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Sounds pretty encouraging! Hope it goes great.
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