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SURVEY RESULTS: Work & Disability

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Note: This survey is still open. Your input is important! You can take the survey HERE.

Last month ProHealth conducted a survey on Work & Disability. Results of the survey can be viewed HERE.

Survey Results

A total of 316 people filled out the survey. The majority had Fibromyalgia (60%). Eleven percent had been diagnosed with ME or CFS, while 29% reported having a dual diagnosis of FM and ME/CFS. Roughly 32% also had a wide range of other diagnoses, including chronic migraines, various forms of arthritis, hypothyroidism, POTS, Sjogrens, depression, lupus and hypermobility joint syndrome. The majority of respondents (47%) had been ill for more than 11 years. While most respondents fell within the moderately ill range (57%), a significant number (36%) were severely ill.


The majority of respondents (59%) said they were no longer able to work at all. Roughly 20% worked a full-time job away from home, while only 3% worked full time from home. Nineteen percent worked part-time jobs, 14% away from home and 5% from home. Of those who worked away from home, 42% said they had not asked for any job modifications to accommodate their illness. Of those who did ask for job accommodations, 40% said their employers agreed and 18% reported that their employers refused.


Only one-third of respondents received some form of disability payment. The majority (80%) received Social Security Disability, while 13% received Long-term disability through their employer, 5% got Supplemental Security Income and 2% received short-term disability through their employer.

A total of 239 people said they are currently considering applying for disability. Forty percent reported feeling guilty asking for disability, while 21% said they felt they deserved disability but had no idea how to proceed. Forty-one percent didn’t know how they could continue working but couldn’t afford to be without an income for two years while waiting for approval.

Long-Term Disability Through Employer

Eighty-seven respondents said they had applied for long-term disability through their employer. Most (39%) were still in the process of applying or appealing. Almost a quarter of the respondents said they were approved the first time they applied, and 13% reported being denied initially but winning approval when they appealed. Twenty-four percent were denied and did not win their appeals. Only 25% hired a lawyer to help with their long-term disability claim.

The process took less than a year for 54% percent of those who eventually received long-term disability through their employer and a year or more for the remaining 46%. Most were approved for fibromyalgia (67%), 27% were approved for ME/CFS, and 44% were approved for multiple other conditions – either in addition to or instead of FM and ME/CFS.

Social Security Disability

A total of 137 respondents said they had applied for Social Security Disability. Forty-seven percent were eventually approved, although only 15% were approved the first time they applied. Just 13% were denied and did not win their appeals, and 34% are still in the process of applying or appealing. Forty-one percent hired a lawyer to help with their Social Security Disability claim.

The process took more than two years for 34% of respondents and one to two years for another 27%. Eighteen percent were approved in less than six months, while 20% took six months to a year. Most were approved for fibromyalgia (70%), 35% were approved for ME/CFS, and 57% were approved for multiple other conditions – either in addition to or instead of FM and ME/CFS.

Additional Comments

One hundred people made additional comments, most explaining the difficulties they had with the disability process and the hardships placed on them and their families because of the long wait times. A couple of people said it took up to eight years from the time they first applied to finally be approved. One commenter summed it up by saying, “The disability process is so that in order to get disability payments from your employer or the government, one gets sicker because the process is long and tedious.”

Feelings of frustration, stress and humiliation were commonly expressed. A recurring theme was the inability to live without an income or health insurance while waiting for a decision on their claim. Several people reported not appealing or not even applying for disability because they didn’t have the strength or cognitive abilities required to navigate the system. A few people made helpful recommendations for others who are considering applying for disability:

“I was trained by the state disability board to help clients with severe & persistent mental illness apply for and received benefits. I used that knowledge & experience to apply for benefits on my own. There are 2 important points to any successful claim: 1) documentation and 2) presenting a clear, layman’s description of the level of disability (including side effects, plus the social and emotional impact and most importantly Activities of Daily Living (ADLs) like shopping, bathing, cooking, housework, etc. Let them know how bad it gets!”

“People applying for disability need to realize that Social Security does not care that you cannot do your particular job; if they determine you can do ANY job, you will be denied. The doctors Social Security will send you to for exam are being paid to say you are fine. The value of detailed medical records from your own doctors cannot be overstated. Don’t go through the process without an attorney who specializes in disability.””It was a matter of proper documentation, understanding how to answer questions in a way that reflected my limitations, persistence, recognizing that I would have to see several mental health doctors b/c of the way fibromyalgia & cfs are perceived by SSDI, and trying to adhere to many proposals of many doctors despite low success rates. I learned to discover how to be my own best advocate in regards to both SSDI and doctors.”

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