Sometimes having a rare disease can be inconvenient

Sometimes having a rare disease can be inconvenient. Last week I went to the dentist for my bi-yearly check up and cleaning. The dental hygienist is one I’ve seen before and who understands that the whiteness on my tongue is part of my PC. This time however, she was concerned because there is a place on the lower side of my tongue where the whiteness runs down the side, unlike the rest of the white areas which are basically symmetrical. The white was also a lot brighter. The hygienist didn’t say “cancer” but I’m sure that’s what she was thinking. She showed the spot to the dentist and advised me to see the oral surgeon down the hall. She even went so far to see if that office could see me when I finished my check up. My dentist was pretty sure it was just part of my regular white tongue, but again, because this white patch was different from the other parts, he said it couldn’t hurt to get it checked out.

So after my dental appointment, I went down the hall to the oral surgeon’s office. I, too, was quite sure the white streak was just part of my regular white tongue. I feel like I’m well educated about PC, but honestly, I’d never really looked at that lower side of my tongue before. I couldn’t say whether that unusual white part had always been there or if it was new. As I sat in the waiting room, I stewed about whether or not I should just walk out, especially since this oral surgeon didn’t accept my insurance and the visit would cost me $50.00. But then I didn’t want to be stupid and ignore something that could be a potential problem. I finally decided peace of mind was worth it.

I had to first explain to the oral surgeon all about PC and my tongue. At first he thought I was there because of the whiteness on my tongue because he started telling me different ways to possibly get rid of it, although he did tell me it would probably just grow back. I knew he must be pretty knowledgeable because he even called it Leukoplakia. [IMPORTANT - the correct name of this PC condition is leukokeratosis and not leukoplakia. As leukoplakia can be pre-cancerous and leukokeeratosis is not, knowing the correct term is important for PCers in speaking with medical professionals. Editor]. I quickly assured him I wasn’t there to try to get rid of it – that he just needed to look at the funny white streak and tell me if it looked like the rest of my tongue or if it was something I should be concerned about.

The doctor determined quickly that it was just part of my PC. He did want to measure it and take a picture of it. He also said to watch it and that I could come back in six weeks as a follow up. But I think we both knew I wouldn’t be back.

It’s okay. I paid my bill. I told Dave about it at over dinner that evening. Before I even told him I decided to pay for peace of mind, Dave said it was better to pay and know for sure it wasn’t cancer or something, than not know and wonder, especially if it had been something more than it was. Sam piped in on the conversation and reminded us that once he had been told by another dental hygienist that he was biting his checks and tongue and therefore causing the white stuff in his mouth.

And that’s what I mean about it being inconvenient having a rare disease. I know a lot. But I still don’t know everything. And I know more than most. I often find talking with others about PC that we don’t know what’s always natural because we’re not dealing with “natural” things in the first place. We have to learn first what’s “natural” for PC and then help others learn. And for me, even when I think I know everything, I still find I’m learning.