Chapter 8

Changing the Way We Look at Work

Writing is more than what I do to make a living. Being a writer is who I am. Tying my sense of identity to what I do is at the heart of my struggles with chronic illness and work. Who will I be if I am no longer able to write?

Most of us need to work. We have to pay our bills, put our children through school, and plan for our old age. If we're not covered on someone else's health insurance plan, we need the benefits our job may provide. But the need for money is only part of the picture. Work helps define our place in the world. When pain, fatigue, or cognitive problems make it difficult for us to continue at our former pace, we face some difficult and painful choices. The way we approach these choices is a reflection of how well we accept ourselves and our disease.

In this chapter, we'll examine how difficult it can be to remain on the job and try to cover up our growing disabilities. We'll also explore the connection between work and self-esteem and discuss our right to special accommodations, such as a more comfortable chair or a reduced work-load, that allow us to remain productive as long as we can. The phrase "reasonable accommodations" has a very specific meaning according to the Americans with Disabilities Act (ADA), and we'll discuss both our rights and our responsibilities under the ADA. We'll also highlight the long and often arduous process of applying for Social Security Disability Insurance (SSDI). Finally, we'll talk about the benefits and pitfalls of self-employment, which offers flexibility but also comes with long hours, unpredictable income, and a lack of paid sick leave or medical insurance.

Most importantly, we'll discover that we can define ourselves by who we are rather than by what we do. Striking a balance between our career aspirations and the need to protect our health is a key ingredient in our recovery.