When my test results came they were covered with multiple +’s. My doctor assured me that, yes, I was truly sick; that the myriad of symptoms harassing me were not the imagined folly of an attention seeker, or an attempt to get out of work. They were, he said, signs of a real and, while not curable, treatable disease. I hobbled from his office that day on legs stiff with pain, climbed into my vehicle, put my head on the steering wheel, and wept.
I was not glad to know I was sick or to be sick, and had no idea the long road ahead of me. I was simply happy to know I was not insane. In my body, I carried a pathogen – – a wiggly, sneaky spirochete that could be identified under a microscope. So now, when people asked what was wrong, I could say definitively, “I have Lyme Disease.”
Little did I know . . . truly little . . . this disease, at least the chronic version, came wrapped so tightly in politics, it had been strangled into a mere syndrome. Just a collection of symptoms and the claim of unknown etiology.
Once again, almost three years later, I am in my car with another laboratory report. This time, a Lupus panel. I requested it because I suffer so many of the symptoms. This page is full of “negatives” and “within ranges,” and I am weeping. Not out of joy as one might assume but frustration, plain and simple. I was hoping for the words, “positive,” “elevated,” or “out of range.”
You may be thinking, I am insane after all. This has to seem crazy and probably offensive to those who have Lupus. I may, indeed, at this point, be a little mental, and I really do not mean to offend. I will try to explain my desire to be diagnosed with a progressive, awful disease.
As a nurse, I knew going in, there was no test to confirm Lupus. A positive on any one of the many tests commonly run does not mean one has the disease, while a negative does not mean one doesn’t. Confirmation involves, as with most autoimmune illnesses, a battery of tests that could all mean something else, and the clinical diagnosis of a physician based on symptoms.
This has to be exasperating for Lupus patients, always leaving them with a hint of doubt, a bit of worry; the possibility they may have something else instead, afraid they may be on the wrong track. They probably feel some days they would give anything for pathogenic proof.
But, as I have learned, a clear etiology doesn’t always hold up in the court of medical or governmental opinion. A wiggly, active, clever spirochete in your blood, muscles, joints, and organs does not, for some reason, necessarily make a convincing argument.
So I wanted a Lupus diagnosis. I wanted it because it is legitimate in the eyes of the world. And if I am going to have the symptoms of a real disease, I would like people to believe I have one. Lupus, MS, ALS, all count. They are not referred to as “post disease syndromes.” They garner, as they should, sympathy, empathy, walk-a-thons, telethons, marathons, ice bucket challenges. Celebrities raise awareness and money for these ailments. And all the governmental agencies that hold the power and the purse strings take them seriously and search for cures.
These afflictions should get attention. They are serious and devastating and treatment needs to continue to advance. But the horror of one disease does not negate the horror of another.
So I am in my car, weary of explaining; of the questioning looks, implications, and innuendos. Did you see a tick? Did you have a rash? Lyme disease makes your knees hurt, right? It’s caused by a bacteria? I didn’t know that. Well, at least it can’t kill you. Just a few weeks of antibiotics and you should be good, right?
I am in my car thinking that I am done; done feeling defensive and trying to prove this is genuine. Just because I am sick, doesn’t mean I have to become an activist, does it? I can just close up and know within myself that I am really ill. Someone else doesn’t have to believe me.
I am in my car thinking maybe I am crazy; maybe this is all in my head, and I do not really have crippling pain, suffocating fatigue, memory loss. What if my sometimes stumbling, drunken-like gait is put-on, but I’m so nuts that I don’t realize I’m doing it. What if some psychosomatic invention is causing the muscle spasms, the shortness of breath, the heart palpitations? It’s been awhile since I have had doubt about the truth of my condition, but somehow this piece of paper takes me back.
I am in my car crying, experiencing all the symptoms of multiple real diseases that people believe in and care about; suffering as much as some with MS or Lupus, but stuck with a “fake” disease, just this left over syndrome that is supposedly “cured” by 21 days of antibiotics but has cost me thousands over the last three years.
I fold up the results and tuck them in my purse. I don’t even tell my family they were negative. I think they might be disappointed too that I am not sick with something they won’t have to defend or explain. This paper in my purse, doesn’t mean I don’t have Lupus, but it means I can’t say that I do. Maybe I’ll talk to my doctor about testing for something else, or maybe I’ll pretend I’m well. Maybe, as hard as that is, that would be the easiest.
Lyme feels like this.