Next Time Someone Asks That Question …

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!

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