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.
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.
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.**