What does being diagnosed with a serious disease mean to you?

What does being diagnosed with a serious disease mean to you?

This is a really interesting question, and oddly, one no doctor has ever asked me.

Talk about a great open-ended question. If you're at a cocktail party and want to get someone else to handle the bulk of the talking (specifically someone who has been diagnosed with something serious at some point in life), this question will let you off the hook for a good half hour. Come to think of it, I guess that explains why doctors don't ask that question.

So what does it mean to me? At first, it meant an escape from an unhappy life and a fresh start. Then, it meant a choice between either working constantly at being healthy or just giving up and taking drugs and powering through, settling for less than optimal health and not looking my best. Now, finally, it means achieving balance between taking care of myself and taking care of everything else. But I know this now: I have to put myself first, or there won't be any of me to put anywhere else.

read what other lupus patients had to say about this question at the Lupie Log:
http://tinyurl.com/4pbe8e4


Carla Ulbrich, The Singing Patient
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Humorous songwriter, Speaker, and Author of "How Can You *Not* Laugh at a Time Like This?" Get the book: http://tinyurl.com/348hroc

hear the songs: http://www.thesingingpatient.com

What' So Bad About Lupus?

A friend asks: "Have you ever spoken to someone and told them you had Lupus only to have them say to you that they know someone who has it that that person is " in Perfect Health?" Then they look at you as if to ask what's wrong with you that you think its so bad. Its aggravating to say the least."

The first and most obvious answer is this: You can't be in perfect health and have a diagnosis of a chronic illness. That's just so obvious. If they were in perfect health, their diagnosis would be "perfect health." Not "lupus."

Secondly, you can't see lupus, so how do you know by looking at someone how healthy they are? Maybe you only see them on their good days, the ones when they are up, dressed, made up,. and out and about.

It reminds me of how we look at other people's relationships and think "oh their marriage is perfect." then we're stunned when they split up.

From Douay-Rheims Bible 2 Corinthians
For we dare not match, or compare ourselves with some, that commend themselves; but we measure ourselves by ourselves, and compare ourselves with ourselves.

To borrow some wisdom from 12-step programs, don't let this person live rent-free in your head. Ultimately what matters is being at peace with yourself and your choices. If you know you're doing what you need to do, and you believe you're living the best life you are able to give your particular case of lupus- we are all so different- then it really ultimately doesn't matter what this person thinks. Because they're not living with it.

You can get educational pamphlets from the Lupus Foundation or the Alliance for lupus research if you want to educate someone and have a piece of lit written by a third party, giving your point of view some credibility.

But if you want a short-term solution on how to shut this person up- and who wouldn't?- tell her "that's interesting. I know a person with lupus who had a stroke and kidney failure." (me, by the way).