CFS Tuesday

Part of our ongoing series about life with CFS.

Tomorrow is Independence Day in the United States, and that has me thinking about what independence means to people with Chronic Fatigue Syndrome.

Before I got sick, I was independent and self-supporting. I had a great job, was a productive member of society, lived on my own and didn't need much help from anyone. Now, I am disabled, unable to drive a car let alone work. I'm fortunate to be married to a wonderful man, but if I had to live alone I would need a great deal of assistance. As it is now, we use grocery delivery and house cleaners. My mother drives me to my medical appointments.

Not all people with CFS are as disabled as I am. But implicit in the diagnostic criteria for CFS is that a person's fatigue and other symptoms must substantially decrease his or her previous activity levels. Some people with CFS may be able to work, but may have to change jobs or reduce their work hours. Social activities fall by the wayside, as may plans for education or travel. Young people with CFS may need at least some periods of home schooling and tutoring. During a crash, all of us need help with laundry, food preparation, and other routine tasks. Sometimes, people with CFS must move in with family. Others are not so fortunate, and struggle to take care of basic needs. I know of more than one person with CFS who has gone months without leaving home, or weeks without leaving the bedroom.

Independence is a frequent casualty of CFS. We have to figure out how to cope with things as simple as sweeping the floor when we may be too weak to walk across the room. For me, the more difficult task has been adjusting to needing help from others. I would much rather give help than receive it. It is hard to admit that I cannot do something as simple as buy stamps at the post office. For a time, I struggled with feelings that I wasn't worth anything if I couldn't do anything. For me, freedom from those erroneous beliefs has been a different form of independence.