Disability comes with large costs. Besides having an income that’s usually far lower than what the patient is used to, disability can also lead to social isolation as well. For patients no longer able to withstand the rigors of work, however, a disability pension can provide a financial lifeline and a chance to recover at least some of their health.
Studies suggest that employment rates of people with myalgic encephalomyelitis (ME/CFS) are low; 15% are believed to work full-time and less than 50% work at least part-time. Many of them will depend on their government’s disability pension system to help make ends meet.
Because these disability pension systems require that applicants document their inability to work, myalgic encephalomyelitis (ME/CFS) patients must gather extensive evidence regarding their limitations.
Then, patients must convince government authorities that they are truly disabled by a valid illness, which often requires convincing uninformed people that ME/CFS exists, and that it is serious.
Unfortunately, most patients fail to receive any type of disability pension from their government.
In the United States
The U.S. government runs two disability pension programs, Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). In addition to the government programs, many employers in the U.S. offer Long-Term Disability (LTD) insurance programs.
Social Security Disability Insurance (SSDI) is a U.S. government insurance program for workers that almost all employees in the U.S. pay into. The extent of the benefits you receive from the program depends on how much you’ve put into it. Phoenix Rising member “nyanko_the_sane” has created a discussion thread called SSDI Resources of Interest with links to resources and information about the SSDI system, including useful application tips.
Supplemental Security Income (SSI) is a U.S. government insurance program for poor people who are unable to meet the criteria for SSDI, or for disabled children.
Long-Term Disability Insurance (LTD) is not a government program. It is provided by your previous employer, if you are lucky enough to have worked for an employer who offered it. This discussion describes some of the tactics used by insurance companies to deny claims and how patients might counter those tactics.
The Massachusetts ME/CFS/FM Association’s Guide to Disability, which is available for free, is a complete guide to disability issues for U.S. ME/CFS patients.