Friday, April 10, 2009

Why didn't you tell us?

Chronic illness is an odd thing, especially coupled with my in-born germanic stoicism.

Over the last week or so a common question has been "I had no idea! Why didn't you say something?"

I have been trying to answer that question for at least 20 years. I don't know. How do you say - hey, I'm cold and tired all the time because my circulation system doesn't work because my liver isn't doing its job.

How do you say - I don't drink because I got a bum liver and after I turned about 27 the very idea of alcohol began to turn my stomach.

How do you say - I may have to miss a lot of work, and I don't know when, if ever, but when it does happen it will be right then, and I think I'll know when it's imminent (I didn't!) and we can prepare then, aren't you happy to be my boss now???

How do you say - at some point I will be completely unable to care for myself and I am going to rely on you physically, emotionally, and financially for an undetermined amount of time but will you be part of my care team anyway?

How do you say - this is me. I come with this. Every day from this point forward, I will have to do x, y, and z to take care of myself and take this gift seriously, and live a new life, and it will probably affect your life in ways that I cannot imagine, but will you be my friend anyway?

And perhaps, most difficult for me - how do you say - there will be no children, and I won't be allowed to adopt, and I may very well die long before you, but will you hold my hand anyway?

How do you say all of this without seeming to be a whiner, or the girl who called 'wolf', or without succumbing to the blank look from the other person which says "but you don't seem sick at all, I don't really believe it's that serious". Plus the other loaded stuff that comes with it.

People closest to me would always know, or at least surmise, that I was unwell. The rest of me was so focused on living a "normal" life that until the last 6 months or so, I 'got over' a lot. Eventually, if not in so many words, each of those statements gets worked out as people become my friends.

Have I left some people out? Probably. It's awkward. It relies on trust to some extent, and a lot on my own confidence in a relationship, and on opportunity. Maybe in the next twenty years I'll get a handle on it.

1 comment:

  1. Shirley, I can relate. Just know that your true friends will always be by your side. One thing I know for sure is that our lives are not planned. We do the best we can with what is handed to us.