Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness

Social Secretaries and Hostages

I don’t know about you, but I don’t have a social secretary.  The only people I know of who do are those who are so wealthy that this position is really an extension of their brain.  I want to make note of this because unlike so many experiences in our lives, illness does not make an appointment.

When I was first diagnosed I remember thinking, “Maybe I can have a flare next Wednesday in the afternoon”.  I seemed to be free, it wouldn’t interfere with work and I could give my illness the attention it deserved.  I know now that I was being unreasonable, even delirious in thinking I could control my illness in that way, but it was worth a try.  The say, if you don’t ask, you’ll never get.

My body never said, “be prepared to spend so many hours in waiting rooms, labs and exam rooms”.  I was never consulted about the trajectory my body would take as I thought about my next step.  Unfortunately, we aren’t able to schedule the diagnosis.  We aren’t able to incorporate a treatment plan only during down times in our professional, family and social lives.

At least for a brief time, illness takes us hostage and makes what many would consider to be unreasonable demands.  It dictates your schedule, for some even deciding when and how we eat and sleep.  It intervenes in our social plans, financial plans and often interferes with your personal relationships.  Is it possible to enter negotiations with your hostage taker?  Are there concessions that can be made so that you can regain the upper hand?

We often think of surprises as good things like when someone throws us a surprise party.  Unfortunately, some surprises carry a heavy price, so how will do you handle surprises?  What do you do when your health springs something on you, especially if you’ve been feeling well?  How do you get your surprises to be good ones?


I've lived my life in service to others. I'm focused on mental health and how it impacts our relationships, culture, and society. Through creative expression and narrative I believe we can impact change.

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