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

I haven't been to work in a long time

Every day is an emotional and physical question mark. That is just the way it is, and I'm okay with it. Who needs predictability!? **I say that somewhat sarcastically.**

While I still seem to struggle with the notion of a routine - to have or not have - I realized that one "routine" has been broken. For some time now, I don't feel as if I have to accomplish something (or not do something) within a specific amount of time "because I have to go to work tomorrow".

That's right - I have broken free of the haunting, "I'm going to work on Monday" feeling.

This isn't to be confused with wondering if I CAN work, or feelings of meeting self-imposed responsibilities...it is just the feeling of getting out of bed, and spending 8-10 hours at paid employment. It was like a habit...predictable...it became a part of who I was. And now it isn't.

I still haven't managed to comfortably answer the question, "do you have a job that you go to?", or "so what do you do?", or the simple, "where do you work?"

I met someone new a couple of weeks ago, and sure-shootin', she asked me, "So do you a job that you do on top of making jewelry?"

My answer..."No. I have MS".

I was mortified at myself! What a way to answer that question! Why couldn't I have said, "No, not right now"? Heck, even, "Nope" would have been better than what I did say. What a way to make someone uncomfortable...including myself.

So I am finally comfortable with the fact that I'm not going to work tomorrow, so hopefully next, I can find a way to be comfortable in telling people that.

Emily