themighty logo

The Problem With My Invisible Illness Is That It's Invisible to Me, Too


Yesterday I had a new patient appointment with a new doctor. I didn’t want to go. Aside from a sore foot, I felt pretty good. I didn’t want to go back to being a “sickie.” I didn’t want to deal with multiple doctor appointments with more tests, more drugs and hours of waiting in freezing offices. But I had to.

Short backstory: in 2005, my lupus – which had been in remission for a while – got into my kidneys. For the next seven years I dealt with doctor appointments but eventually, when my health had improved and my lab work remained stable, the specialists dismissed me. They told me to have my regular doctor keep watch over my blood work and if things went south, I could come back. So I took their advice. It was nice to be free of specialists and hospitals and all that mess. I went once a year for a checkup, lab work and prescription renewals, and that was that. Until last year when I developed another new condition: esophageal varices and possible cirrhosis.

I don’t want to be a patient again. It’s nice not to be tied to medical appointments. Even though I’m not cured – I still have lupus and always will – it’s nice to be in remission for a while. But here’s the problem: lupus is an invisible illness. You can’t look at me and tell I have it. The only real visible symptom is that telltale facial rash, but I haven’t had that in years. You can’t see, either, that I have kidney disease. You can’t tell I have liver disease unless I get really, really sick with it and I turn yellow.

But I can’t tell, either. Most of these conditions don’t have any symptoms, or the symptoms are so vague or so gradual that I don’t feel I literally need a doctor to run lab work and other diagnostic tests to decide whether or not I’m sick, and if I am, how sick. Most of the time I can’t trust my own body to tell me when I’m sick. My body doesn’t feel any different if my platelets are a happy 90,000 or a piteous 10,000. I can’t see my complement levels to know if they’re high or low, nor can I discern my liver function just by looking.

It’s scary if you think about it. Not only are most chronically ill people at the mercy of our diseases, but many of us don’t even know what’s going on in our own bodies. You don’t know, I don’t know and sometimes even doctors don’t know what’s gone wrong.

***

They didn’t do a whole lot at the new patient appointment, mostly just asked questions and manipulated the crap out of my sore foot. They x-rayed my foot and said they would call if they found anything wrong. As far as I’m concerned, there is something wrong. My foot hurts. But is something diagnostically, medically, indisputably “wrong” or am I just imagining things? I have to wait and see.

Friday I go in for fasting labs. As with the x-rays, the doctor will call me if they find anything wrong. My body doesn’t feel “wrong” – only my foot – but what do I know? I just live here. Will they call me back Friday? Make me wait till Monday? Tuesday? Or never? It doesn’t matter what I feel like; they could call and tell me my lab work is wonky and I need to go to the ER right away. Or they could make me wait for a call that never comes and leave me to assume I’m fine.

Next time you start to criticize someone who doesn’t “look” sick, please remember: We can’t necessarily see it, either. And which one do you think is scarier?

This post originally appeared on Of Words, Wolves, and Whatever Else.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via as3d.