Q: What kind of work do you do?
CFIDS Answer: I have a non-traditional job.
Q: What is it that you do?
A: I work a 24-hour, seven days a week job that I’ve had for 4 years without vacation time.
Q: What kind of crazy job is that?
A: It does sound crazy, and especially because IT chose ME. It is the hardest work I have ever done. I don’t know day to day what the job requirements will be. And I don’t have the choice to quit it, as much as I’d like to.
Q: Why can’t you leave it?
A: My work is to live with and heal from a very severe, chronic illness that has been around a long time but it still is not well understood. It’s like having your own business in that only one person – me – knows as much about my body and what I should do each day to encourage it to do better.
Q: I never thought of living with a chronic illness as work. Do you miss traditional work?
A: There’s nothing I’d love more than to get well and work in a normal job. But as long as it is out of the question, I have to do the best I can with my current work.
Q: Do you at least get benefits from your work?
A: Not tangible ones like paid holidays, insurance or a savings plan, and I could really use one of those. But I do get a lot of skill-building, like people in traditional work.
Q: What skills could being chronically ill give you?
A: Patience. Assertiveness. Developing boundaries. Humor. Asking for help. Setting priorities. Letting go of what I can’t control. Listening. Better communication. Courage. Tackling impossible challenges. Creativity. Resourcefulness. Imagination. Making do. Stretching limited resources. Flexibility. Pacing. Trusting myself. Trusting others.
Q: (Speechless. Wanders off thoughtfully.)
Many thanks to Judy Kruger for creating
and sharing this original piece!