If you have a non-standard health problem, you really need to refine your research skills. There is an endless supply of information out there, but you have to a) know how to find it, and b) learn to sort good information from bad information. It’s not easy. I was very lucky that in college I found a hobby that encouraged me to learn good research skills for a completely unrelated field (medieval history, if you’re curious) and that has helped me immeasurably in my health research.
The internet is a great and wonderful thing. You probably already knew that. To me, the ability to share and compile information quickly and easily is one of the best things we’ve gotten from it. When I was learning to research it was books and paper card catalogs and microfiche. Google has changed everything about how we treat information and it puts a lot more power into the hands of people who learn to find and use that information.
If you have an under diagnosed/treated disease like celiac or PCOS or thyroid or anything else, another thing you can do is find the patient run information sites. These are sites run by people who have the very problem you do and they have absolutely devoted themselves to learning everything they can about their particular problem, because they found that western medicine either couldn’t or wouldn’t help them. Stop The Thyroid Madness is the one for thyroid issues, whether you are untreated or under treated. They have links to research, for doctors, for blood tests, and for everything they’ve been able to identify as a related issue, like adrenal fatigue.
That’s just the one for thyroid. No matter what your personal health issue is, I’m sure there is a patient based site where you can find really great information that your doctor may or may not even know. Many of these sites will also have blogs you can follow, and groups on Facebook where you can ask questions of others who have your issues to see how they dealt with them, or to share your experience with someone newly diagnosed. I’m finding these resources to be invaluable, not only for knowledge, but for emotional support. It feels good to know there are other people who share your frustration, your excitement at a new treatment, or who just know what your daily life looks like through the stress of whatever your issue is.
Of course, the available research isn’t always what it should be, and the results don’t always look at the real problem.
I recently had a discussion with a good friend. She has a very scientific and analytical mind, both by nature and by training. We were discussing health research. She is inclined to always believe the scientific findings. I don’t have a problem with that, I like research and empirical results myself. But I did take some time to put forth the idea that for some food and health issues, they’re doing the research wrong. She seemed very surprised that you couldn’t count on a group of people to display the same results in the same time frame with regards to a single stimulus. Western research methods depend on this. My sensitivity reaction to strawberries, for example. I’m almost always going to present some kind of hayfever reaction to a stimulus. In the case of strawberries, in 6-12 hours I’m going to have watery eyes and start sneezing a lot. A friend of mine will come down with a fever and joint aches in 3-4 hours. Someone else will break out in hives in 30 minutes. Our science doesn’t really know what to do with this.
Another major issue is that many of the subtle issues have similar presentations, so it can be very difficult to track down which particular issue a patient is having. Chinese and traditional medical approaches do better with these things because they focus on whole body wellness and related systems model, rather than an ‘attack the symptom’ approach.
I think what I learned is that it’s no surprise that western medicine has so much trouble with these subtle issues. Western medicine, and US society in general, isn’t really set up for the level of subtlety that you need to trace some of these problems.
Which is another benefit to the patient based sites. If enough people come together with a similar presentation, maybe we can start driving the research, instead of being silent victims of it.