EDS Fact 3 - Zebras not Horses

There is a saying that goes 'When you hear hoof beats you think horses' which defines the medical community to the letter. They don't go looking for something unusual if there's an easier explanation. So, the question is, what happens when you don't fall within the realm of the normal?

Well, in general when you don't get a feasible diagnosis from a doctor you start digging yourself. The EDS community has for quite some time had more information online than you can find in a medical library. For almost all of us when we find out what is all involved in EDS we have an 'Ah, ha!' moment and then dig even deeper.

It is hard for you to get a doctor to agree with a self-diagnosis. I understand that people can self-diagnose anything, but when you've been looking your whole life for something that fits with what you're experiencing and doctors flat out turn you down you get frustrated and/or disheartened. For many getting a diagnosis is a long process and many more never truly get it.

As I explained earlier EDS is a problem with the formation of collagen. The basic structure of a major component of our bodies is wrong. With this comes a lot of problems that aren't normally connected. We can have easy bruising like anemia, but not have anemia. We can have joint pain similar to arthritis, but without it's debilitating effects. We can have joints that tend to dislocate and no typical signs of joint problems. We can have carpal tunnel type symptoms, but they come and go of their own accord and it isn't truly carpal tunnel.

For a doctor it is simpler to diagnose us with the other things than to try and grasp the concept of a system wide problem. This system wide problem can't be fixed and they can't make it better so they'd rather treat you for something else and see if it works. This is becoming more widely known in the medical community, but it is still rare. Many times until there is a definite diagnosis in the family it is believed that no one in your family has it. For those of us who've searched and searched for something that fit what we experience all day, every day and then to have it quickly dismissed it can be very frustrating. What we need is more research and more awareness. We're not crazy, we're just ecstatic that we've figured out that we're not crazy!