Undiagnosed

Look on any number of medical boards, and you'll find an astounding number of individuals desperately seeking a diagnosis. Throngs of people post messages listing their symptoms, medical tests and results, and other important factors. There is no commonality in sex, race, age or background. They come from all walks of life, and they live all over the world.

It seems odd to many for someone to go to the internet looking for a medical diagnosis. The internet is such an impersonal place, and without seeing someone face to face, it's impossible for them to determine an exact cause. However, when patients with similar problems connect, sometimes patients have new avenues to explore at their next doctor's appointment. Many health sites offer Q&A with doctors, allowing patients to ask questions outside of the health care setting.

The truth is these people wouldn't be turning to the internet if they weren't desperate. Others label them as hypochondriacs, which is usually incorrect. Hypochondriacs would come up with brand new illnesses constantly. The people I'm talking about have the same problems - the ones that no one can figure out. These people want to get better.

The difference between having a diagnosis and not having a diagnosis is treatment. With a diagnosis, you know what you're fighting. Doctors can use whatever treatments available to control or even start to repair damage from the illness. Without a diagnosis, there is no treatment. All you can treat is the symptoms - so it's constantly putting out fires without fixing the underlying problems. Doctors focus on covering the pain with narcotics to make the patient's life bearable, but the patient gets worse. Without a label or diagnosis, that's all a doctor can do.

Imagine a car engine consistently getting louder, and the mechanic insisting you turn up the radio because they just can't find what's wrong. Acceptable? You decide. And your body is much more important than your car.

Doctors sometimes tell patients it's all in their head, or that they're just oversensitive. Most doctors do not practice medicine in this manner, but there are quite a few stories that circulate about those that do. It's mind-boggling why they choose to treat people for their career (money obviously). Other times the doctor simply gets frustrated and just gives up. Either way, the patient has nowhere to go except backtracking to find a new doctor.

Lest you think I blame doctors, I will say that it is most definitely not their fault in all cases that there are so many undiagnosed individuals. Medicine is far from simple, and the body is so complex that misdiagnosis and undiagnosed individuals will always be a reality. I do think that before labeling something 'idiopathic' everything else needs to be comprehensively ruled out - as in completely ruled out. This means more testing and doctor's time, but in the end leads to appropriate treatment and less of the undiagnosed patients. Illnesses that require several episodes for a diagnosis need better and more effective ways for doctors to diagnose patients without the watch and wait philosophy.

Regardless of fault, the sad truth is the emotional and physical toll it takes on these individuals is heartbreaking to say the least. Because they have no name for their illness, their friends and family often blow off their symptoms as made up or imagined, leaving the individual feeling ostracized and tormented.

The bottom line is that undiagnosed individuals need more respect and supports than they currently have. Our society needs to change its views on illness to include those that may not have a label.