Dancing, Please Let It Be Dark

There is this strange place that I inhabit.  A place of the chronically ill.  But it’s also a place of the working world.  Most of the people I know tend to be in only one of these places.  Not always, but typically.  And I’m sure I’m not the only one who does this weird dance between the two places. 

On one hand I struggle with my health and all the fun things that come with my medications as well as lupus itself.  I struggle with energy issues.  I struggle with pain.  I struggle with mobility issues and such.  I also struggle with stiffness and swelling.  Let’s not get into the mouth sores and such.  

On the other hand I struggle with the standard work issues, like getting up to go to work.  Getting myself ready for work.  I struggle with all the typical work dynamics.  

Try marrying these two hands together and it becomes all types of fun.  Especially as I do not loudly advertise my lupus or how I feel each day.  Most times I am doing all I can to appear “normal” while I’m at work.  I just want to be doing my work and sometimes I can do that.  Of course sometimes lupus wants to be noticed.  Sometimes lupus doesn’t want me to work.  It wants me to do anything but work. 

The issue becomes I don’t want to be seen as less than my peers.  I hate not being able to work because of my illness.  And at the same time I don’t want to push too hard that I end up not being able to work at all.  And the thing is I doubt I’m doing justice to lupus and how serious it is for me.  I am hiding it so to speak and down playing it.  At the same time I’m not always able to do justice to my work or my peers in my field because lupus gets the best of things at times.  

Let’s face it, this dance is not the hokey pokey, no amount of turning myself all about will fix things.  No friends, this dance is more like a herby jerky robot dance.  And it isn’t pretty, but it seems to be my thing.

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Lupus, Work And Me

I know it’s a blessing to be able to work as a lupus patient. I know that the mere fact I can work, bring in money etc. means I’m not trapped in a cycle of minimal finances.

I also know that being able to work means I get to have a taste of the freedom that comes from normal life. You know, just doing ordinary things. And yes there is a price to pay for that, in terms of being horribly exhausted by the end of the day. Or you know being closer to sick people while taking medication like chemo. But at least it is a form of freedom.

What I’ve discovered over the years, is that when you can work and other people in your support group cannot, they do not consider how sick you may be. They resent you for being able to work. They perceive your illness to be less severe. They tell you that you aren’t a poster of what it’s like to live with lupus.

I’ve had people tell me that I don’t really know what it’s like to have lupus. I’ve had other people tell me that what I have cannot possibly be lupus because lupus is so debilitating. And that’s within a group of people who are supposed to be supportive.

What these people do not understand is that while I am blessed to be able to work, it comes at a very steep cost too. But of course, as they say, I’ve made that choice so therefore the price must not be too steep.

When I was first diagnosed, I heard horror stories about how shortly after being diagnosed, death was the next step. But before you died, you found yourself trapped in dreadful poverty. And I vowed to prove this all wrong. So I struggled through to a PhD. I struggled to work and be taken seriously in my field. I struggled to make sure my bills were paid and a safety net was there because insurance is fleeting.

And I thought, well surely other lupus patients would understand the fears and the need to keep going. I was wrong. But that’s okay. Not every lupus patient will work, some will at a very high cost. And I will be there for them. I will applaud their struggles and acknowledge the fine line we all walk.

Like An Ordinary Person

I have been called many things in my life.  Some of they were lovely and others, well, others were beyond awful.  I’ve also been called man you things between those ends of the spectrum.

Recently a coworker has taken to calling me a rock star, a navy seal, hardcore and bad ass.  Not all at the same time, as she likes to intersperse this throughout my day.  I know she means well and I know for some people those words are things to be proud of.  But to me it doesn’t make sense.

The only thing rock star about me is that I can rock.  In a rocking chair.  And if I’m a star, it’s the low-energy fading away kind of start.  I have never been in the military and while I can swim, not at al like a seal, nor a navy seal either.  The only thing hard about me is how hard-headed I can be.  And sure I can be an ass, squally a wise ass.

Heres the deal, yes I have lupus.  And yes some days are pure torture in trying to do stuff. My hands or feet may decide not to work.  Brain fog may kick in, making it hard to lecture on a topic I know well.  Or getting my body out of bed, washed, dressed and to my place of work may be all the energy I have for that day.  And sure at those times delivering a lecture, writing a paper or working can see like something super amazing. Because those are the days I am struggling with lupus.

But it doesn’t mean I’m anything other than a person with a chronic illness, just trying to get through life like ordinary people do.  I just happen to have an extraordinarily annoying and demanding chronic illness, which frankly can be a diva at times.  Nothing more.