I’m okay… but maybe I’m not

Tomorrow (or yesterday, when I post this) I have a New Patient appointment. Yep, I’m starting over again with a new doctor at the county hospital, one who can refer me to the specialists I need. I hope.

I don’t want to go. But I was hospitalized 13 months ago – that’s more than a year – and it’s taken me this long to get an appointment, so I better not pass it up. Because I have an invisible illness.

There’s been a lot of publicity lately for invisible illnesses. Many people who have them have faced lot of name-calling and abuse and all manner of judgmental remarks from other people who decide that because they don’t “look” sick, they must not be sick. That’s wrong and it’s ignorant.

But did you ever think that I have to go to the doctor not because I feel bad, not because I’m sick or injured, but because I have an invisible illness? No, you can’t look at me and tell I have lupus. The only real physical symptom that shows would be the telltale facial rash, but I haven’t had that in years. You can’t tell from looking 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 I have don’t have any symptoms, or at least not many. Or the symptoms are so vague or commonplace that they don’t seem to matter. I literally need a doctor to run lab work and do sonograms or x-rays or other diagnostic tests so the doctor can tell me whether or not I’m sick, and if I am, how sick. I can’t trust my own body to tell me. My body doesn’t feel any different if my platelets are a happy 90,000 or a piteous 20,000. Sometimes I get gargantuan bruises, but sometimes I don’t. I can’t see my complement levels to know if they’re high or low, nor can I discern my blood pressure just by looking. Changes can be subtle or come on so gradually that I don’t feel them.

It’s not just me, though. Think about it. Many people with cancer don’t know they have it until a doctor finds something suspicious. Maybe you fall and hurt your wrist. It’s bruised and swollen and painful. Is it broken? Sprained? Maybe you tore a ligament. How can you tell?

It’s scary if you think about it, and most chronically ill people have a lot of time to think about it. Not only are we at the mercy of our diseases, we don’t 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.

Update: they didn’t do a whole lot at the 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 find anything wrong.  As far as I’m concerned, there is something wrong.  My foot hurts.  But is there something diagnostically, medically, indisputably “wrong” or am I just imagining things?  I have to wait and see.

Friday I go in early for fasting labs.  Same thing: they 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, doesn’t matter what I feel like, my lab work is wonky and I need to go to the ER right away?  Or will they make me wait for a call that never comes to let me know things are okay?

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?

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