Pros and Cons of Researching Your Disease
In this page, the pros and cons of researching your disease are outlined in the hope of helping you to better decide whether
this approach is right for you.
PROS
It Could Save Your Life
There are many different sub-types of disease, each demanding different treatment. No doctor, no matter how dedicated, can possibly keep up
on every promising new development for every type of the disease. As a patient, you only have to research one type of the disease and one situation - yours. Although you don't have the training and expertise of a physician, you do have the advantage of having a lot more time to spend on your one case. All of this means that by researching your disease yourself, you might find a treatment that your doctor doesn't know about that could save your life.
Unfortunately, at least some physicians do not keep up very well at all, and it
is very hard to tell if yours does or not. If you have the misfortune to have
such a doctor, even a small amount of research may quickly reveal a standard
treatment with a higher success rate than what your doctor is proposing. Again,
you could save your life.
If you are an HMO member, you have special reason to do some research. The less
care an HMO gives, and the less often it refers patients outside their network,
the more profit the HMO makes, so there is an inherent conflict between your
best interests and the HMO's best interest. This does not automatically mean
that HMOs always short change their patients, indeed some patients receive
excellent treatment from their HMO. Still, in my experience, HMOs are less
likely to tell their patients about promising new treatments or clinical
trials, particularly if these treatments or trials are not available within the
HMO's network. In this situation, a little research could save your life.
If you have a rare disease, you also have a
special reason to research it. Your doctor probably has little or no experience
treating it. Through research, you might find an expert on your disease, and
you can find whatever is known about its treatment. Your doctor may have
already done this research, but if not, you could save your life.
It's Empowering
Activities such as calling a research center on the phone, going to the
library, or doing anything that could actually help is very fulfilling.
When you get a disease, you lose control over a lot of things in your life.
The disease itself can take control away by its symptoms, but the medical
treatment can also do the same thing. Being subjected to invasive or toxic
treatments and procedures that you don't fully understand, for reasons
that aren't really clear to you, can certainly make you feel like
everything important that is happening to you is out of your control.
Understanding your medical treatment and gaining control over it can be a
wonderful antidote to those feelings of helplessness and hopelessness. It
can also help you understand your treatment and help you to do everything
possible to make it successful.
You Can Make a More Informed Decision
By reading the literature you can get more information about things like
success rates, side effects, and prognosis than you normally would get
during a doctor's appointment. This can enable you to better decide
whether the treatments that your doctors are proposing are right for you.
Much of the same information can be had by asking your doctor the right
questions, but doing some research yourself gives you a vastly greater
amount of time to think about it. I strongly advise you to discuss the
whys of any decisions you come to on your own with your doctor. That way
if you make a mistake in interpreting what you find, your doctor will have
a chance to correct it.
CONS
It Can Be Difficult and Intimidating
Plowing through the thick jargon of technical medical literature isn't
easy for anyone, but some people certainly have an easier time than
others. Certainly if you don't try, you won't know whether you can make
sense of it or not. This is a good place to mention the value of friends
and relatives. If reading densely written technical reports is not your
cup of tea, maybe someone you know would be willing to help. Many friends and relatives may wish there was something they could
do to help, but don't know what that might be. If you just ask, they'll
probably be more than happy to help. Obviously, a friend or relative in
the field of medicine or biological science is the most likely to be able
to help, but knowledge of any technical field or science can provide an
edge. Finally, some of the information you come across will be written for
the layman, and you will be able to understand it.
You Might Make the Wrong Decision
If you go it on your own, you could misinterpret what you read and make a
bad decision. The solution is not to go it on your own. Be sure to
include your doctor in your thinking and decision making, and be sure to
weigh his opinion and reasoning carefully.
You Will Have to Confront the Statistics
Knowing this dismal statistics can be terribly, terribly difficult,
but remember four percent is not zero percent, and also
that new treatments could raise these odds.
Understanding what the statistics really mean can allow you to extract
hope from despair. The finest writing on disease and statistics I have ever
encountered is Stephen Jay Gould's The
Median Isn't the Message. Reading this will give you real hope based
on reason.
One additional note; reading out of date statistics can make you think
things are worse than they are because treatment may have improved. Never
rely on old data! You can also get the wrong idea by taking prognosis
information from data that does not really apply to your situation. You
may have prognostic factors that change your chances from the general
averages, or you might've misinterpreted exactly what situation the
statistics apply to. You may want to discuss what you find
with your doctor.
Finally, if you don't want to confront the statistics, consider having a
friend or relative do the research for you.
There Might Not Be Any Better Treatment
It is quite possible that even after a lot of time and effort, you will find no
better treatment then the one your doctor recommended in the first place. You
can look at this two ways. If the prognosis is really bad, confirming it could
be difficult to take. On the other hand, if the prognosis is reasonable, you
can rest assured that you are indeed getting the best treatment available. In
either case, knowing that your doctor is recommending the best treatment will
also increase your confidence in him (or her).
Finally, although there are more Cons listed than Pros, this is not something to be decided by the numbers. You have to
decide what is important to you.