disclosure and fear

My previous entry to this blog was about realizing that I haven't had to search out or nurture any new relationships since my diagnosis. Unless you count my relationship with myself. =)

Connected to that idea - how do you make friends when you have MS (or any chronic illness) - is when and if you should disclose your medical situation. This has repeatedly popped in to my mind lately: whether I'm reading a magazine that has an article on the exact subject, reading comments on my blog, or struggling with my own "I don't work because I have MS" situation.

Let me say this very quickly - I don't think that there is a correct answer to this. But boy, is it ever a difficult thing. New friends, old friends, family, employer, future employer, neighbour...who needs to know?

For myself, disclosing this information to close friends and family was a no-brainer. Disclosing to my employer was a different bag, because I quickly became unable to work. I felt as if I owed my employer an explanation, but at the same time, didn't want to provide him with any reason to terminate me. Which lead me to worry about job hunting for the rest of my life!

What should I tell people? How do I inquire about benefits? How do I ask for flexibilty?

I
still struggle with future plans. And I don't have answers to any of the above questions, because right now, they don't apply to me. I can only concern myself with what is happening in the here and now. Instead, I worry if the current economic situation will pull my insurance provider down, thus cutting my income in half. I wonder if Jason should leave his current job, causing us to loose our health benefits. For me, that is the here and now...and so is filling my days with meaningful actions and relationships.

So how will I go about enjoying the here and now?

I think that I know the secret - live honestly, live true - BIG AND GENUINE.

Disclosure on a level that you need for you...not what other people need from you. Disclosure for empowerment, not excuses.



Emily

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Little bits about my life with MS

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