Hepatitis and Me: Your First Doctors

Everybody should be tested for Hepatitis C, and a buddy it has, AIDS.

If you don't take the test for yourself, take it for the people you love and the people you're around. You need to know so you can be careful about where you bleed. Infecting other people is more than irresponsible, it's criminal in some jurisdictions.

That aside, it's just plain bad manners.

We live in America, and no one should be able to force you to take a test for these diseases. Worse yet, no one should be out there spreading the word that you have them.

If you think you had a bad day yesterday, the day you are diagnosed with Hep C could be worse. After the numbness goes away, and after you have taken a long walk, it's time to think about who to tell.

Telling the wrong people that you are infected can cost you pretty much everything you value in life. Conversely, NOT telling the right people can be equally as devastating.

You don't have to tell anybody. You can thank your Constitutional right to remain silent and the Privacy Act for that. And nobody can make you tell them. Nobody. And if they refuse you anything - a job, hell, even a window seat on the bus - sue them.

But suing them will do you absolutely no good if you're not around to spend the settlement. This leads directly into the first people you should tell, and that would be the medical types.

You need to know how sick you are. Chances are that you were diagnosed by a general practitioner or through a blind test. Neither of these methods are going to give you any idea of the condition of your condition.

Keep in mind that Hep C affects people differently. Some people never get sick. Others are so whacked out that death is a relief from absolute hell. Your condition may never require major treatment, it may be fine with preventive care.

You need more information. That you should get a second opinion is a no-brainer. A third opinion is a very good idea.

Choosing your doctors is a matter to think over. Not all doctors are created equal. Some can kill you - one very nearly killed me.

If you are receiving health care through an insurance plan or the government, think long and hard about their strategies for treating people. HMOs and health plans are usually businesses. All factors aside, they exist to make money. The government's motives are exactly the opposite. Government plans are always under pressure to save money.

The result is that your care can boil down to dollars and cents. One strategy could lead to subjecting you to all kinds of unnecessary tests. The other could wind up misdiagnosing or undertreating you entirely. Either path isn't in you best interests.

I took the word of a general practitioner who knew about as much about Hep C as a Third-World witch doctor. I funked out for a couple of years and whined about my impending death. It was something like four years later before I got a doctor who was willing to work with me and put together a program that would extend my life.

And it's working. Well, so far it's working.

The lesson is that you shouldn't freak out because you have been diagnosed. Get a second opinion - and a third if you can. Demand the attention of a specialist when it comes to diagnosis.

You don't know a whole lot about the true state of your condition yet, keep that in mind. Cases are on the books where initial tests gave a false positive reading.

Think about getting a completely independent evaluation. One where you get out your checkbook and fund the thing yourself. It'll be expensive - between a couple hundred to several thousand dollars - but it may provide you with a completely different outlook than a government or insurance plan.

Once you've made up your mind about getting more information about your particular medical condition, it's time to think about the business of living. There are people you should tell about your condition, and there are people who should never find out.

People will tell you that having Hep C doesn't have to change your life, but they're wrong. If nothing else, you have a new responsibility to your friend, your family and your community in general. You have something in you that can kill them.

It shouldn't be this way, but it is.

E.D. Easley is a former editor and publisher with newspapers and magazines in Europe and America. He lives in Spokane, Washington, where he's undergoing treatment for Hepatitis C.