If you looked at me without knowing I had a chronic illness, you'd think I was the girl next door, well woman actually! The great thing about this disease is that you can look amazingly well -- even fool the doctors, hard to believe, and that's where the problem lies. If I had something more visual or a condition that most people are familiar with, would I be treated differently?
Yesterday for instance. I was doing my radio show. Not one of the presenters knows anything about my inability to eat, or that I suffer from a rare condition. I mean it's not something you gladly tell people is it? I was asked to eat a piece of cake I'd made, live on air. What could I say? If I didn't eat it, was it not good? If I did, I'd be in some pain for the rest of the day -- I ate it! "Mmmm, delicious with a coating of butter," I said!
It stuck firmly in my throat and afterwards it was difficult to speak. I had to tell this guy that eating for me, is a no no! I approached the subject very tentatively, so tentatively that he didn't have a clue what I was on about? So I came right out with it. "I have a feeding tube." There I said it! His faced changed from wonder to amazement.
"I'm sorry," he said. Now that's the reaction I didn't want. You see, I don't want sympathy or anyone to feel sorry, I just want to be treated as a normal person with a disability that doesn't affect my life in such a way that I have to explain my self every time. As for the cake. It stuck there for hours until I finally managed to get rid of it, and without going into detail I think you know what I mean.
Now I have several presenters at the station all going out of their way to make me comfortable. I'm not complaining but, please enough is enough! I hope I have cleared the air and not dug a huge hole for myself. Time will tell!