A Funny Thing Happend On My Journey With Lupus

There is a funny thing that happens when you are diagnosed with a chronic, invisible illness. It’s funny, but not in the “ha ha” sense of things. Rather it’s funny in the sense of odd, peculiar and unusual. And what is this funny thing you might ask? It’s called the cloak of invisibility with a shield of a visible label. I know, sort of defeats the purpose doesn’t it?

Let me explain…once you have a diagnosis in the medical world, you end up with a label and are forever after referred to as that label. I have become “lupus patient”. Let me share with you…on my last visit to the hospital I was admitted as “lupus patient Sally Sue”. I wasn’t “Sally Sue who happens to have lupus”. I was up front and center a lupus patient, name coming after everything else. When this happens enough times you end up in a strange situation where you find yourself identifying and maybe even referring to yourself in that way. You become your label. And what a powerfully visible label it is!

When I have medical appointments, I am “lupus patient Sally Sue” who also must be deaf or perhaps not worthy of some medical specialists time. They talk into records (for transcribing later on), they talk at me, but never to me. After all I am “lupus patient” first and foremost. As if I have become something of a case number.

At the same time as all of this is happening, there is a huge chance that you are trying to be “normal” for loved ones, friends and whoever else you deal with. You don’t look sick; you don’t want people to see you as a burned or such so you simply pretend things are fine. You become creative though, in your invisibility cloak. You can’t keep appointments, you miss important outings, but you get creative with the reasons why you weren’t there. “Oh that was on Tuesday, sorry I had (insert whatever excuse avoiding the fact you were too tired, too sick etc.) suddenly come up. Next time I will make it.” You smile of course and are so sincere when you say these words.

Keep in mind if you say it enough times you soon won’t be invited anymore because let’s face it if someone keeps turning down invitations or has to leave early (insert other items here)why bother continuing to invite them? So you soon find yourself off of guest lists, off of invitations and such. You become the person in the room who no one really sees any more.

Of course there is a pretty good chance that you won’t want someone to see you, not the real you anyway. I’m talking about the you that feel ready to burst apart into a million decaying or damaged pieces. The you that, if you looked how you felt, would be locked up on charges of frightening people. I frequently feel as though I’m something out of a Tim Burton movie, or perhaps Beetlejuice. And now and then I want to shout at people, remind them I am still here, but not if it is as “lupus patient”.


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