- Last Updated: 20 November 2015 20 November 2015
Many individuals who are moderately or less ill can continue to work without chronic harmful consequences—but only if they are able to alter the conditions of their work. The approach to use is "job accommodation". If you are such a patient, you could maintain your ability to work over time if you could reduce the number of hours and/or the nature or severity of the job tasks/work load. Perhaps you could work from home one or two days a week. A person with a valid disability may claim the right, in many cases, to job accommodation under state and federal disability laws. The Americans with Disabilities Act and similar state laws grant the right to job accommodations for certain types of employment. Employers covered by these laws are required to make "reasonable efforts" to assist the employee to maintain his or her employment by adjusting work conditions to accommodate the disability. However, the employer is only required to make such accommodations that are reasonably permitted by its business operations. Often larger businesses are better able to make such accommodations.
Therefore, if you are a patient with ME/CFS or FM who is physically and mentally able to continue working with work accommodations commensurate to your symptoms and illness, job accommodation is the route to take. As a prudent person, you should become aware of your legal rights and the practices of the employer before making direct requests for changes in working conditions or asking for a job transfer. The Massachusetts CFIDS/ME & FM Association can assist patients with ME/CFS or FM with some resources and counselling in the area of job accommodation. If the employer is covered by the law and does not make a good faith effort to assist the employee, or tries to unfairly terminate the employee, there are remedies under the various laws. For instance, a complaint may be made to the federal agency that enforces the Americans with Disabilities Act. States also may have agency enforcement mechanisms. In Massachusetts a complaint may be filed with the Massachusetts Commission Against Discrimination. In such cases, competent legal advice is required.
Massachusetts Rehabilitation Commission—tel. 617-727-2183. The major function of the Commission is to provide vocational rehabilitation services to the disabled. If you are determined to be disabled by the Commission, you may receive extensive training, education, rehabilitation and support services for future employment more compatible with your disability. (You can receive assistance from the Commission if you are collecting Social Security benefits or if you are disabled and not receiving such benefits.) The Commission also offers homemakers/chore services to assist the disabled.
The Disability Law Center—tel.: 617-723-8455 The Disability Law Center in Massachusetts is a state-wide legal advocacy, information and referral agency for individuals with disabilities. The center does not usually provide individual legal representation, but it can assist in providing attorney referrals
Disability lawyers at the Center can answer by phone more difficult technical and legal questions concerning many aspects of the Social Security Disability programs. If you have been denied unemployment compensation because you cannot work full-time and can only work part-time due to your disability, the Center may be able to assist you obtain benefits. Also if you cannot continue to do your present job due to your level of disability but could still function within your company at reduced hours or in another capacity, the Center can advise you as to your legal right to job accommodations.
The Massachusetts Office on Disability—tel:1-800-322-2020. This agency can provide information, referral and advocacy for a wide variety of issues and problems facing disabled individuals. The Office provides direct advocacy for individuals who are having problems obtaining services from the Mass. Rehabilitation Commission, or who are suffering various forms of job discrimination. Information, referral and advice are provided for many other problems—including housing, medical assistance, transportation, independent living, and other needed services.
Many cities and towns have disability commissions, social service departments, or civil rights commissions that can assist you. To find out about this type of assistance in your community, call your city or town hall.
- Last Updated: 20 November 2015 20 November 2015
Suppose that until the onset of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) or Fibromyalgia (FM) you have been healthy and fully or partially employed in your occupation or profession.
As the illness continues or worsens, you try with increasing difficulty to maintain your original level of work in order to maintain the necessary income and health insurance to meet your costs of living.
However, continuing full-time or part-time work often takes an increasing toll as you cannot expend the energy required, and the illness is exacerbated.
Chronic disability and the inability to work
Your experience with ME/CFS and FM and the inability to work often falls into one of three categories:
1. Your illness is of moderate or lesser severity so you are able to continue working over a continuing length of time without making the illness worse—but often only if there is some reduction of work load/work tasks.
2. You become acutely ill with severe symptoms that do not improve, and despite trying to continue to work at your job, you find out fairly quickly that you cannot do it. You are so sick that more and more days must be taken off. After some weeks or months, despite determined efforts, you make arrangements to work part-time with a less strenuous set of work tasks. Finally, before too many months pass, you find you cannot keep the job under any conditions.
3. You, who after becoming ill, continue to work over a long period, sometimes years—although you are often very sick. You come home exhausted, have a quick dinner, and go to bed—only to repeat the pattern. For economic and or other reasons, you continue to make superhuman efforts to work. But the illness remains severe, and these efforts often prevent any chance for slow recovery. At this point, your body begins to give you no choice but to stop working. Or, before this point is reached, you realize that to continue working is truly jeopardizing your long-term health, and it would be better to stop working in order to try to facilitate recovery over time.
Deciding to seek disability assistance
If you are so sick that you cannot continue to work at all, or work consistently enough to meet basic financial needs, then you must use disability income and medical insurance programs. For many patients their economic survival may depend on obtaining all available assistance.
In most chronically-ill people, there is the drive to continue working, no matter how difficult and how severe the physical and mental effects. In our work-ethic society, a person's intrinsic value is often thought of in terms of his/her work. To be chronically ill or disabled often has a strong connotation of having less value as a person. Traditionally, people who are not working are sometimes considered malingerers or lazy. Society often casts a disapproving eye on those who legitimately can't work. And as we are conditioned to this point of view, many of us will feel ashamed of not being able to work—even if we are really sick and are making ourselves worse by continuing to try to work. There are, of course, financial imperatives that push us to keep working to meet our expenses, especially if we have no other means of support for ourselves or our families.
To realistically counter the work-ethic imperative, we remind people that your intrinsic worth—no matter what society says—is not based on having a job, but on being born a unique human-being. You are precious without regard to this or that job. Now it is a natural state that if you are healthy and can work, you want to contribute to society. But if you are too sick to work, that is OK. Being really ill is a simple fact without moral content. Then your job is to take care of yourself with whatever assistance family, friends, communities and our nation can make available.
All disability programs are essentially "insurance" programs. Anyone can become chronically ill, so as a society we mutually make a decision to spread the risk around. Everyone pays something into a vast pool, knowing this makes it possible to be helped when in need. So if you need to go on disability, realize that you have paid for your insurance—either directly or indirectly through premiums, work, or taxes. It is no shame to avail yourself of an insurance policy in time of need. Beyond this, a society that takes care of those truly in need is the kind of society we should all want to live in.
At some point, if you are seriously ill, one of two things often happens. Either illness leaves no choice—it is physically and mentally impossible to continue to work—or you have not yet reached the collapse point, but know that it will happen soon. So you recognize it would be better to make an intentional decision to go on disability rather than being forced to when even more damage has been done to your health.
When you reach this "balance point"—where you are eligible for a disability program or where you "could" continue working for awhile, but it is clear that such work is harmful—we suggest a taking stock of the course of the illness and considering stopping work and taking the time to put an emphasis on recuperation.
Deciding you can no longer work, whether absolutely enforced or by relative choice, can be a frightening experience. Even when the steps to obtaining financial and medical assistance are clear and known, it can feel like jumping into the void. There seems to be no certainty that you will receive assistance.
Will my employer be supportive; will the insurance company approve me for disability; how can I get health insurance? If I have to apply for Social Security Disability Insurance, Supplemental Security Income, or Medicaid, how do I know I will be accepted and how will I live until I am approved?
The uncertainty, initially, in these questions can be scary and daunting. However, the facts are these: hundreds and thousands of disabled persons with ME/CFS or FM who can no longer work successfully receive various disability financial and medical assistance—including housing assistance when necessary. These programs enable them to survive when they cannot work. Other programs are also available when necessary, including housekeeping and homemaking services.
The keys to availing yourself of these programs are to first learn about them, and then to learn how to successfully navigate the necessary steps to use them. There are two important imperatives: persistence, and pacing yourself during the ongoing process.
This section provides links to more resources on this topic. Some documents in this section may require Adobe Reader, which is available as a free download, to be installed on your computer.
Attorney Fee Agreements for Disability Claims: What is a Fair and Legal Agreement? Read this important article before you sign a fee agreement contract with an attorney.
Disability Discussion—Barbara Comerford, ESQ is a presentation by Attorney Barbara Comerford to the NJ CFIDS Association (2010). Barbara Comerford, ESQ, has a practice specializing in disability law in the jurisdiction of New York and New Jersey. Through her work, Ms. Comerford has become a specialist in ME/CFS disability and spoke to the issues ME/CFS patients need to know. She has held a post as a board member of the NJ CFIDS Association, The CFIDS Association of America (CAA), and The American Association of Chronic Fatigue Syndrome (AACFS) before it became the International Association of Chronic Fatigue Syndrome.
Disability Insurance Claims: General Information by George H. Thompson, Attorney-at-law, specialist in Long-term Disability Insurance. A comprehensive outline of issues and procedures related to long-term disability insurance.
Updated information regarding the 2014 Social Security Disability Ruling
Update for patients with ME/CFS, FM, or Lyme disease on important issues affecting Long-term Disability Insurance and Social Security Disability A report of a meeting of the Massachusetts CFIDS/ME & FM Association Disability Committee with two Boston disability attorneys in Fall 2014. This article contains important information concerning LTD insurance claims. **This is a very important article for anyone applying for long-term disability benefits.**
- Last Updated: 05 November 2023 05 November 2023
This area of the website provides important information on many forms of needed assistance for those who have become either partially or fully disabled due to chronic illness and must, therefore, reduce their work hours/tasks or stop working altogether.
While most of the information below is general, or applies to ME/CFS or Fibromyalgia, there is a separate article on Long COVID and Social Security Disability.
Job Accommodations: For those who can continue to work part-time with reduced hours and/or responsibilities, state and federal laws require many employers to provide disabled patients with reasonable job accommodations.
Disability Insurance Programs: For those who are too sick to work, there are a variety of disability insurance programs that provide income assistance. These include: 1) Employee Disability Insurance; 2) Social Security Disability Insurance and Income; 3) Workman’s Compensation; 4) Public Sector Disability Retirement.
Health/Medical Insurance for the disabled: For those who lose their employee medical insurance due to disability, the federal and state governments offer medical insurance programs including Medicare, Medicaid, COBRA, the Affordable Care Act, Commonwealth Care, and Commonwealth Choice. These programs also include prescription drug coverage. Pharmaceutical companies also provide free or low cost prescriptions for those with low incomes.
Housing Assistance: Federal and state governments provide various types of subsidized housing for the disabled who meet financial eligibility requirements.
Food, Energy, Home Care, Transportation, Prescription Drug, and Legal Assistance programs: Federal, state, and local governments, as well as private agencies, offer these types of assistance to the disabled.
Disability Handbook: More detailed information on applying for Social Security Disability is found in the Massachusetts ME/CFS & FM Disability Handbook: How to Obtain Social Security Benefits if You Have Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).
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Notice about names
The Massachusetts ME/CFS & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) and other federal agencies, including the CDC, are currently using ME/CFS.
Massachusetts ME/CFS & FM Association changed its name in July, 2018, to reflect this consensus.