Meeting Persephone

Disclaimer - I hate loathe and despise doctors. Period. I do not, however, recommend that anyone else take my position on this nor neglect their health. My reasonings are purely my own (laced with a few bad experiences of loved ones).

I don't normally elaborate much on my health online. The internet gives me an opportunity to be "normal" and I prefer it that way. But today there is a headline on Yahoo! about a woman who "correctly diagnosed herself with cancer using the internet" and of course it's met with great disdain by the medical community. The same medical community that wanted to waste precious time running tests on irrelevant diseases while this woman (and many many many like her) was becoming more ill by the day.

Ok. Here's where I get a bit pissy. The same assholes who would ignore symptoms, run a plethora of tests for other ailments while trying to figure out what the problem is (meanwhile the patient's life is more at risk with every wasted moment), and maintain a holier-than-thou attitude with the sick people they vowed to care for now feel entitled to cop an attitude about the means people use to seek information and help for themselves.

Now - with that said - do NOT confront me about the hypochondria running rampant from people looking information up online. I am fully aware that this is an issue. That does not, however, excuse the treatment by doctors for their patients.

I happen to suffer from a few "orphan" diseases. What does that mean? It means that there are so few people who have these diseases that very little money is spent in researching these illnesses. They are not the only health issues that I have but for the point I'm trying to make, I'm going to focus on them. I spent years trying to get the proper diagnoses for these issues through the "proper" routes but to no avail. The problem with orphan diseases is that they are so rare that physicians seldom come into contact with them and then don't know what to do with the patient who presents with the symptoms. I went online, searched symptoms, compared and went through a process of elimination, then returned to my physician(s) with my research, requested the proper tests and FINALLY received the diagnoses that explained the symptoms I was coping with. Of course with orphan diseases, especially the chronic variety, the "treatments" are typically insufficient.

I have about an 80-90% success rate in self-diagnosis. This is higher than the average doctor and I have managed it without years and years of frustration, testing, invasive procedures, and skeptical glances from doctors (though not entirely - until the results come back I still deal with the shitty attitudes). Most of us don't have money to spend on endless testing and their on the job training. I realize that you "can't put a price on your health" but if the efforts of the pro-active patient eliminate the need for months or years of searching to get a diagnosis and subsequent treatment - I say you can put some price on it. You can eliminate the need for pointless testing and achieve a quicker diagnosis making treatment a priority instead of searching.

I am NOT a doctor (thankfully) and I do not support those who are playing games of disease rummy (collecting a series of diagnoses for the sake of attention). I have legitimate health issues that have since been (mostly) diagnosed even if not adequately treated. I am not writing this entry as an invitation to have bitching sessions with disgruntled people who've yet to receive diagnoses - I feel your pain but I have plenty of my own issues to deal with. I have already extended myself to those I'm willing to converse with about these things and that is all I have to offer at this point.

My point in writing this is to make clear that in the age of the internet, there are indeed purposes for it and this can be one of them. There are also a large number of support groups and for those who are suffering from orphan diseases where the likelihood of encountering others who have those diseases in "real life" would be rare they are incredibly helpful. The internet has been an invaluable source of information and comfort in the search for answers in already distressing times when doctors tend to lend to the distress more than alleviate it. Instead they would be wise to consider those things that are brought to their attention by their patients rather than rolling their eyes, disregarding it completely, and then - months or years later - finally admitting that it MIGHT be the problem, running tests only to learn that the patient was on to something.

Doctors need not fear. There are still plenty of people who succomb to their tortuous treatments, tests, and crappy attitudes. I'm sure they will have job security despite the usefulness of the internet and the pharmaceutical funds will continue rolling in.

Am I bitter? In the words of Sarah Palin - "You betcha!"