With medical test results, it’s not always as simple as “negative is good, positive is bad”…
As the doctor wrapped up the visit, she explained that the tests she ordered might not be covered by our medical insurance, and went on to add how mad people get when they get the bill, “especially if the tests are negative, I don’t know why anyone would be upset about negative test results”. I didn’t have the words right then, my son was restless at the end of the visit, and my mind was chugging away at the other parts of the visit, but as I returned home, I struggled with the flippant dismissal.
I was there for answers. My son was sick. I didn’t want him to be sick, he already was and I needed help, and to get help, I needed to know what was wrong. The last thing I want is for my child to have a major medical condition that impacts his whole life, but by the time we got to this appointment, we were so desperate for help that a negative result would not seem any better.
We had been on the hunt for months. He wasn’t well and wasn’t going to get well without major intervention. I had strong suspicions of what was wrong, Hirschsprung’s disease. There was nothing about that disease that I welcomed into my son’s life. Yet he was failing to thrive with a weight below the first percentile on the growth chart, and desperately sick. If it wasn’t Hirschsprung’s how would we help him? By that point, I was afraid we’d lose him if we didn’t find an answer.
The doctor’s comment was one of sincere confusion, so I’m glad I didn’t have my wits about me enough to respond at the moment because it would not have been productive. My son did have Hirschsprung’s disease. Finding out didn’t make me happy, but knowing empowered us. It gave us a plan, it gave us an answer. I wish for all the world it had been simple constipation and that more Miralax would have done the trick. I wish that instead of that being the first chapter in a book of lifelong illness that it had been a short story with a happily ever after. But since it is a lifelong diagnosis, finding out has made all the difference in the world. Knowing what you’re up against means you can act, being stuck with a terribly sick child with no help is not a happy answer either.
If all the test results have been negative, I would have been upset, hopeless and despondent. I took the time to explain that to the doctor long after the fact. It’s not as simple as positive is bad, negative is good.
Alethea Mshar is a Special Needs Mom and Blogger.
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