Confessions of a Lupus Rebel

I was reminded the other day that there is a significant element of my life that I avoid talking about with most people.  I disdain it so much that,  like most normal folks in denial, feign it’s existence on a daily basis and simply behave as if it is not there at all.

The trouble is it is there, and it has a way of reminding me of that in a rather abrupt and unpleasant way. In fact, it seems the more I try to deny it, the more it pokes it’s nasty finger at me as if to say, “hey, who are you fooling?”

Even writing the truth of this is unsettling and frustrating at a most basic level.  As difficult as it is to admit, as much as I’ve tried to fight it over the past few years, there it remains.  I have Lupus.

SLE to be exact (code for never-going-away) Ever since the doctors told me this I have rebelled and resisted, doing whatever I could do to try and fight it on my own, determined that I would have the last word in it’s demise.

It is, unfortunately, still with me.

It’s painful to say that. It feels like somehow I’ve lost. Maybe I have, I’m not sure.

I’ve always been of the mindset that I would not allow this (or any other illness) to affect my life, that somehow I would be the healthy and active person I’ve always considered myself to be and no matter what I was told, I was in control of what happened to my body.  I didn’t want to be viewed as ‘sick’, cringing at the doctor’s use of that word whenever he reminded me that it was something I had to accept.

If you know me at all, you know when someone tells me I have to do something, I most often do the exact opposite.

I’ve never accepted it, not really. Just merely shrugged it off as one of those mistakes someone else made, not anything I’d ever really have to deal with. Besides, it could be way worse, and maybe if I pretend it isn’t there it will just go away.

It didn’t.

Until now I haven’t been really been willing to write about, because somehow when you write about something it becomes more real, if you know what I mean.

I can no longer ignore the fact that it’s impact upon me is beyond my control at this point, warranting my attention and acknowledgment, lest I fall into full and utter disengagement with reality.  I’ve always believed that difficulty is most often much more bearable once we decide to face it’s existence, I so suppose that is what this is.

If you’ve been following me for a while, you might remember that roughly two years ago I wrote about my experience with a 5 week series of infusions I had to get after finding out my iron was not only depleted after months of iron supplements, but nearly non-existent.

That is about the time I was told I had Lupus, and approximately the beginning of my rebellion against it.   Since that time (and before) I have experienced a number of what I would classify as purely ‘obnoxious inconveniences’, nothing more.  Exhaustion, lack of appetite, annoying body rashes/itching, lung collapses, heart issues, frequent infections and night-sweats/fevers on a weekly basis.




lung collapse, aka spontaneous pneumothorax
one random, unsightly rash


Like anything in life when you have no other choice, I adapted to and dealt with it as best I knew how, doing what I could to live with it or around it.Eat well, stay active, stay positive, drink lots of water, go off gluten (which I hate, by the way, I miss my bread)  etc etc etc.


Recently it’s taken a nasty little turn and has decided to also set up camp in my bones. I’ve never had bone pain before, so I’ve never thought much about it.  I never would have imagined how much of an impact it can have.
It’s sort of like smoke in the air, touching and changing everything around it.  I’m not sure exactly what it was about this last development that hit me so hard, but for the first time since this all began, there is something in me that feels like giving up.

I don’t even know what that means, really, it’s just how I feel. I am tired of being trapped in a body that seems so normal in so many ways, and yet is so limited that it has become a constant reminder that I am not in full control of my body. I am tired of pretending I feel ok when my body is giving out, and hiding away so no one has to know what is really happening.

Have I lost the battle?

Perhaps, but probably not in the way I think I have.  All I’ve really lost is the deceptive illusion that I can actually control outside forces that may impact my life, that my body is immune to things that may limit or destroy it.   We tend to do that; create facades for ourselves to make it feel like we hold such power, but the truth is we are never really in control in the first place.

I don’t like that, and yet I know there is something valuable in it’s recognition. I can’t say I understand what most of this means,  or if it means anything.  But it’s part of my story nonetheless, and even the most unpleasant chapters of a story need to be told.





4 thoughts on “Confessions of a Lupus Rebel

  1. This may not be the response you’re expecting, but i have three things to say about this post.
    1) You. are. a. badass.
    2) This is so articulate and resonates with me SO MUCH that i feel like i wrote it, forgot about it, and am now re-reading it.
    3) You lost nothing. This battle is YOURS. The way you view your lupus is as someone who is separate from the disease, someone who has it, but isn’t it.
    I’m not sure if you realize that you are absolutely fantastic.
    Keep writing.
    I’ll be reading.

    1. laylay28- Your words have given me more heart, thank you so much, I look forward to visiting your blog!

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