Sunday, April 4, 2010

Difficult Things To Cope With If One Has Lupus, #45903

I still have such a problem with being misjudged...and there are so many aspects to it that even if I didn't have lupus brain going on sometimes I would be overwhelmed.

We are supposed to be mind-readers.  To be able to tell which people want more information about what is really going on with us, and at which times...and which people, and when, don't want to hear another word about our ailments.

But one problem is that if we DON'T explain...then we can get misjudged. Lazy, crazy, stupid, unreliable, unmotivated, not trying hard enough.  Whiny, moody, bitchy, self-centered.  The list just goes on and on.

And then if you are one of us lucky ones to have some episodic brain involvement, and maybe this can make you language-impaired at to explain all this in just the right amount and with just the right words, in perfect sync with the person(s) you are trying to relate to...?

And then there are things like irritability and depression.  I have to apologize here and now to the many many people in service positions I have exploded at...because I was in horrific pain and there was no one else to go to the pharmacy or the grocery store or wherever for me, and my frustration threshold was below zero.  No, no one should be out trying to function with severe pain or nausea or etc.  But I think those of us who are sick the way I am become isolated so there is not much social support.

Depression is ill-tolerated by many people.  I get exhausted now just thinking about how many I have tried to get to understand that sometimes it is brain chemicals.  Anti-self antibodies DO cross the blood-brain barrier.  And then there are the mood altering effects of medications like prednisone.  Some of us are running really hard most of the time to remain in place and guess what, sometimes we can't keep it up.  And I didn't even mention the depressing effects of having one's life changed in so many ways by ill health and invisible disability.  Sometimes I want a t-shirt which says CUT ME SOME SLACK.  But most of the time I just feel despair when I think of the gap between what I know to be my experience...and what I know to be how hard I am trying, all the time...and what people think of me and my "negative", "eeyore" moods.   Even when I'm not depressed the chasm between my reality and their misjudgements of me can be so great that I just want to give up even trying to bridge it.  Hate me if you will; I'm too tired to defend myself.

So isolation becomes a problem but also in some ways a solution.  Isolated...because people get tired of us.  Or they don't believe us when we say it is the disease(s).  Isolated...because we are afraid of being hurt again, of being misunderstood again, of being misjudged again, of being hated again.  And so we give up on people.  Or on life.

About Me

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I've travelled the distance from an Ivy League college to decades of enforced poverty--because I've needed to qualify for government health care in the U.S., since being diagnosed with lupus at the age of 23. I have a personal blog at that I've had so long I'm probably stuck with :) My other blogs are here on blogger...