There’s nothing more disconcerting than telling a new doctor your ailments and hear them say “What’s that?” This happens to me with Addison’s Disease. Lupus is more well known, at least the name is recognized. Chiari Malformation probably has the same level of awareness as Addison’s, though.

It’s frustrating having diseases that aren’t “famous”. Look at breast cancer. Not that I want breast cancer. But the amount of awareness for it is unbelievable. This level of awareness saves lives. I credit the fact that it’s something that can be sexualized. People love boobs. There aren’t campaigns for my 3 that are as arousing as “Save the Ta Tas” or “I love boobies”. Although, I hate seeing product companies profiting off breast cancer because they put the pink ribbon on their packaging. Some of them don’t actually donate to breast cancer, they are just “raising awareness”. You think you’re doing a good thing by buying that product, but they’ve just tricked you. Some charities only donate a small percentage of their collection to breast cancer. The rest goes to “administrative costs”. Whatever that means. I want more awareness for my 3, but I would hate to see it turn into something “trendy” or profitable.

People are afraid of what they don’t understand. It’s hard to make friends or be in a relationship because people don’t understand and it makes them afraid. They just don’t want to be bothered with dealing with it. When in reality, it’s not something they deal with at all.


1 Comment

  1. Having had breast cancer, I can say that yes, it ticks me off as well about these companies raping research dollars for profit. And I feel for your frustration over your less-than-popular illnesses. But look at the other side: I got more than I wanted of fame for a cancer that has left me with 60 inches of scars and permanent effects from chemo and post op complications. Everyone was in my business, asking outright rude questions. Sometimes obscurity is a good thing. Because the long and short of it is that no matter how common or popular your condition is, no one really understands it unless they have been through it themselves. And everyone pretends to understand breast cancer. I cant even begin to understand what it is like to live with Addison’s. Jane Austin died of it, and her letters are horrifying. Im so sorry you have to live with this and Lupus!

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