Sunday, May 4, 2014

Having lupus, Part 2: The bad times

I have found that one of the more difficult things for me to deal with after my diagnosis has been those people who seem to suggest that my illness isn't a big deal, or that I'm being too dramatic, or that a simple cure would fix me right up.  The lupus itself, at times, makes me feel weak, not good enough, defeated.  And when people underscore some of those messages (well-intentioned or not), I have surprised even myself at just how strongly I want to slap them.  (I have -- at least up to the time of this writing -- been able to resist.)
Pictures taken from Chronic Illness Memes
Bottom line, I don't want to be one of those people to anyone else.  The last thing I want to do with what I hope will be a somewhat positive reflection in my posts on this illness is to, in any way, lessen the value or the great weight of anyone else's experience. 

So, to do justice to myself and all the others out there who struggle with ailments that limit our bodies or our minds in frustrating, seemingly-unbreakable chains, I also want to offer a vulnerable glimpse into the dark, cloudy, stormy side.

I try to be positive and upbeat.  I try to think about things optimistically. 

But I also want to be honest.  While I do spend a lot of time looking on the bright side of having a chronic illness -- there IS a bright side, I think -- it's not all sunshine.  And it's easier to talk sunshine than to live it.  Let's all acknowledge that up front.

I need to also acknowledge: Receiving the diagnosis of an incurable illness is no easy thing.  And coping with ongoing unpredictable sickness gets hard fast. 

There are minutes, hours, days of despair.  When I lay in bed consumed in a million different ways.

I have been weary.  In some moments, hopeless.  I have felt like a victim.  I have cried angry tears and shouted angry demands.  Though more of them have been desperate than mad. 

I have pumped clenched fists in the air and stomped my feet.  (My husband laughs when I do this, and we have proven -- more than once -- that his amusement doesn't lighten my mood.)

I have worried and fretted and tried to wring anxiety out of my hands as I've wondered what this symptom or that one will mean for me.  How bad it will get, how long it will last.  What it will lead to. 

I have whined and moaned and wept.

I have prayed and begged for relief.  Sometimes it came blessedly and gloriously.  Sometimes it came much later than I wanted.  In some ways it has yet to come at all.

Sometimes my determination for the day -- with brow furrowed -- is just making it back to my bed at night.  And anything or anyone who may put up any tiny extra obstacle in my way would face the full wrath I felt at not being well.

There are times when my goals atrophy to one: just make it through.

I have bad times. 

But I also still have plenty PLENTY of good times too.  And if there's one thing I've learned from the bad times, it's that I should treasure the good times even more.

And so, when I talk about this blessing or that blessing in upcoming posts.  When I talk about improvements and advances and being better off in ways, I don't want you to hold up some polished account of a muddy reality and feel less than.  This is hard stuff.  For anyone.  And we all come with our own experiences and our own lenses and our own set of strengths and limitations. 

The thing about lupus, and really life in general, is that no one is stronger or weaker.  No one is ahead or behind.  We all have our burdens to bear and no one but Jesus knows any better way of getting through rough days than the way we manage to get through them.

There's always going to be bad stuff out there.  But here's the amazing thing: light trumps darkness, every time.
-Jodi Picoult

This post is part of a series on how lupus has affected me.

Click on the links below to read more:

Part 1: Introduction, The horrific mystery disease

Part 3: How lupus made me a better wife

Part 4: A practice of patience

Part 5: More on the pit

Part 6: Exhaustion

Part 7: Saying no

My diagnosis

My herbalist and the treatment option I am choosing right now

My recent lifestyle changes

To learn more about lupus, you may visit the Lupus Foundation of America.