The Disability Decision

Chronic disability and the inability to work

People living with ME/CFS and FM experience a range of symptoms and severity. The effect on their ability to work often falls into one of three categories:

1. The illness is of moderate or lesser severity, enabling them to continue working without making the illness worse—but only if there is some reduction of work load or adjustment of work tasks.
2. The illness is acute with severe symptoms that do not improve. The sick days mount up. Despite determined efforts, many find they cannot keep working, even after making arrangements to work part-time with a less strenuous set of work tasks.
3. Some people may continue to work over a long period, sometimes years, even though they are often very sick. But these efforts often prevent any chance for rest and recovery. Eventually their body begins to give them no choice but to stop working, or they realize that to continue working is jeopardizing their long-term health.

Deciding to seek disability assistance

When people are so sick that they cannot continue to work at all, or work consistently enough to meet basic financial needs, then they must use disability income and medical insurance programs. For many patients, economic survival may depend on obtaining all available assistance.

Many chronically ill people have a drive to continue working, no matter how difficult and how severe the physical and mental effects. Employment often provides not just necessary financial support, but satisfying work and a social identity. Also, in our work-driven society, a person’s intrinsic value is often thought of in terms of the job they hold. The chronically ill person may feel ashamed of not being able to work. Financial imperatives, of course, also push  to people keep working to meet expenses and provide support for themselves and their families.

Counter to this work-ethic imperative, MassME reminds everyone that their intrinsic worth is not based on holding a job, but on being a unique human being. Being really ill is a simple fact without moral content. People must take care of themselves 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. A society that takes care of those truly in need is the kind of society we should all want to live in.

Common concerns

Deciding you can no longer work 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.

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 in these questions can be daunting. However, the facts are these: thousands of disabled people with ME/CFS or FM who can no longer work successfully receive financial and medical disability assistance—including housing assistance when necessary.

Resources

How To Get On is a remarkable and affirming self-advocacy guide that compiles resources and information for those disabled by ME/CFS or other illnesses. (Please note that this is not longer being updated.)

The Spoon Theory is the original story of how Christine Miserandino explained to a friend what it felt like to live with a chronic ‘invisible’ illness that limited her ability to function.