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The Problem with Going Public

November 18, 2012

Today I made a decision to tell someone that I worked with that I was sick.  We only see each other a few times a year and she was making plans for when we saw each other again.

With Relapsing Polychondritis, I do not know how I will feel tomorrow so I certainly hesitate to make plans for months in advance.  Since I am trying to decide if I can continue working at my current job (which I love), if I will have to cut back on my hours, or if I will have to quit work entirely, I decided to be honest about why I was giving her a “maybe” for an answer.

I gave her the brief details of this horrible disease and the toll it has already taken on me (joint pain, rib pain, cartilage loss in ears and nose, and the recent hearing loss).  Her response was typical:  she cried.

This disease has taken much from me and will take more.  Does it also have to put me in a position where I have to comfort and reassure everyone when I break the news to them?  I do not always feel positive, upbeat, and strong.  I do not always have the ability to make other people believe that everything will be ok.  I want to jump up and down, throw a temper tantrum, cry, and scream, “It’s not fair!”  (Confession: sometimes I do just that.)

I am glad I decided to keep this disease private for a while. I am telling people one at a time which is buying me some time to make some decisions about my future.  It is also giving me time to brace myself for the next wave of tears.   There will always be tears.


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  1. Bev permalink

    Glad to be one who knows. Daily prayers for you.

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  1. Choices | Living with Relapsing Polychondritis

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