Apparently, my being annoyed by the commercial promoting the Lupus website set up by the Ad Council means that I’m “anti-Lupus awareness” or something. This is not true. I don’t think it’s horrible that they’re discussing lupus. It does bother me, though, that more disorders are going undiscussed.

I’ve tried to discuss disorders, autoimmune and non-autoimmune, with doctors, nurses, my therapist, etc., and they look at you like you’re an idiot. If you look at the numbers for posts on sites like But You Don’t Look Sick’s forums, you’ll see that there is a high number of posts on Lupus, but there are more discussions on Ehlers Danlos Syndrome and Hypermobility Syndrome. EDS doesn’t get much attention, which is sad because it can be extremely complex and can be frightening. It goes undiagnosed, too, because the doctors will either be completely unaware of it or unaware of certain aspects. Dysautonomia is another illness that goes untalked about outside of internet forums and some doctors who are specialists in it. (If you look for dysautonomia specialists, they are few and far between.) Lyme Disease also goes undiagnosed because doctors are too busy dismissing the patients or diagnosing them with the wrong illness.

There are so many invisible illnesses out there, and it seems like there are only a handful that get discussed in public. Fibromyalgia/chronic fatigue get discussed because of the common nature these days of getting diagnosed with them. Lupus, whether people admit it or not, gets talked about on news specials, health channel shows, television dramas, books, etc. There are countless sites out there where you can get information about it. (Type lupus in Google and it finds 51,700,000 results. Sjögren’s gets 2,470,000. Dysautonomia gets 1,660,000. EDS gets 413,000. Clearly, people have a bit more of a clue about Lupus.)

Acting like one disease is somehow more important than others because it is deadly (which is true for many rare illnesses), doesn’t have a cure (also true for most illnesses in general), and or because there is no known cause (also true for most illnesses) is, well, dumb. If I’m supposed to be happy that Lupus is getting more recognition, while other disorders are ignored, then I’m sorry, but I won’t be happy about that. Patients shouldn’t have to know more about their disorders than the doctors they go to see. Patients should be advocates for their care, but not educators about the problems that they have. Claiming that the more well-known Lupus becomes the more well-known other illnesses will become is untrue. Doctors, nurses, patients, etc. are not going to learn about disorders that have been put on a backburner unless people are taught to recognize them. Learning about Lupus is not going to inspire people to go learn about other illnesses. This isn’t me thinking negatively. This is me thinking about the way people are.

How do I know people will refuse to learn about the 1,000 or so other rare illnesses out there? First of all, most people don’t want to learn about them. Second of all, most people don’t look past the obvious choices. For example, a lot of people know what Anorexia is, but most people can’t tell you the difference between Compulsive Eating and Binge Eating Disorder. Another example, if I said immunodeficiency to most people they would either think of HIV or AIDS, though there are other forms of immunodeficiency that are not communicable in nature. So saying that acknowledging lupus with a .gov website is going to get the word out there about other similar illnesses is a bit of a laughable statement.