This is a question every lupus patient has had to ask him/herself many, many times. How sick do I have to get before someone takes me seriously? How sick do I have to get before I get diagnosed? How sick do I have to get before the doctors will treat my disease?
The answer is always, always the same: sicker than you are right now. It's no wonder lupus is sometimes fatal; doctors don't pay us any attention until things get really bad. It took me six months of agony to even be allowed to start trying real anti-lupus drugs. It took a further year or so of non-helpful drugs to get put on the one I would have chosen right off the bat, had I been my rheumatologist.
The admittedly relatively petty issue (compared to life-threatening ramifications) that has risen my ire is that of nausea. How nauseous do I have to get before someone, anyone will give me an anti-nausea drug that works? I have family members fighting cancer who tell me they have no trouble with nausea because there are such great anti-nausea drugs out there that the chemo no longer causes them problems. I'm on a fraction of the dose that they are on, admittedly, but why am I not allowed to take a fraction of an effective anti-nausea drug?
Nausea is awful. It's pervasive. It means feeling sick to your stomach all day, every day. Imagine having a stomach bug permanently. I'm still having dry heaves from my chemo dose six days ago, and they honestly expect me to take another dose tomorrow. How sick do I have to get?
I used to have a theory that it was weight related. As long as I remained within the healthy weight guidelines, they wouldn't care how nauseous I got. Well, guess what, folks? I'm slipping off the bottom edge of those guidelines, and nobody cares. Apparently I still don't look sick enough. I have to say I look pretty damned sick to me, especially if I don't wear makeup, nice clothing, etc. to hide my disease.
And maybe, scarily, that's the answer. How sick do I have to get? Sick enough that a doctor will be visibly shocked by how bad I look. If you look healthy, you must be healthy, after all. For a layperson to think this way is reprehensible. For a physician it's unconscionable.
How sick do I have to get? Apparently sicker still.
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