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Learn from Other Patients

Posted Oct 6th, 2009 by Trisha Torrey

When you get sick, and are diagnosed with a difficult medical condition, who do you consider to be the best source for information about your problem?

Most of us would respond that our doctors have the most knowledge.  And that may be true.  But doctors rarely share what they know beyond the basics.  There just is not time during an appointment for us to learn everything we need to know, nor are we usually prepared with every question during an appointment.  Further, while doctors are usually good at fielding clinical questions, when it comes to managing an illness or condition every day, questions will arise they just can’t answer.

So who can we turn to for answers to those questions?  How about someone who has already walked in those shoes?  Someone who has already dealt with exactly the problems we are having?  Yes, often, our best resources will be other patients who have the same diagnosis we have.

We can learn plenty from other patients or from caregivers for someone who shares our diagnosis. There are dozens of questions they can help us with, such as, who is a good doctor for a second opinion?  Are there other specialists who can help?  Where is a good place to buy a walker or other medical goods we may need?  Are there alternative remedies another patient has found helpful?  What was another’s experience with a certain medical procedure?  Answers to these types of questions, when provided by other patients who are suffering in the same ways we are, can be invaluable.

So what’s the best way to find these helpful patients?

One of the easiest and best ways to find other patients is through support groups.  Some support groups are local, so you can attend their meetings in person.  Most are sponsored by local hospitals, large physician practice groups or by associations that represent diseases such as the American Heart Association or the Leukemia-Lymphoma Society.  Ask the nurse in your doctor’s office for information about these groups and find one that meets at a time convenient to you.

In addition to local groups, there are thousands of Internet support groups. You’ll find that many of the same associations that sponsor local support groups provide online versions, too.  There are also independent websites that house forums for individual diseases or conditions.

Plus, blogs (web logs -- online journals written to share thoughts or experiences,) and other places patients post information online may be helpful to us, too.

What’s the best way to find such helpful patients online?

Begin with your favorite search engine like Google, Yahoo or Bing.  Using keywords that apply to your health situation, do a search for health-focused forums (online conversations that take place among people with similar interests) or even social networking sites like Twitter, Facebook, MySpace.  You’ll also find some sites are focused almost exclusively on providing forums.  Here is a master list of health-related Internet Support Groups.
Add the format you are looking for to your keywords. So for example, you may use these keywords, “health disease blog” or “diabetes forum” or “asthma support group.”

But there are some cautions, too.
First, remember that the people providing information to you are not medical professionals.  If someone provides medical information to you, or if information seems overwhelmingly helpful or positive, you’ll want to apply the “too good to be true” test. If the new-found details seem too good to be true, then of course, be skeptical.

For any helpful background or useful information, you’ll want to verify with your doctor that it is correct.  If it’s not convenient to ask your doctor, or it’s not information you doctor necessarily needs to help you with, then try to verify the information online by finding a second credible resource.
Next, follow the money. Look for evidence that the author may be trying to profit from the statements she makes. If so, move on. For example, be suspicious of a blog written by a “nutritionist” who sells herbal remedies.

Be careful to protect your privacy.  In particular, the web-based support forums can entice you to give up too much personal information.  Stop short of providing your full name, contact information, or anything that can point to you as an individual.
Finally, don’t try to give medical advice to others.  You aren’t a medical professional either!  The nature of the Internet is that it can be anonymous.  But that’s both a blessing and a curse.

You’ll be surprised and pleased at what you can learn from other patients, and you’ll feel empowered by helping others through sharing your own experiences, too.

About the author

Trisha Torrey is Every Patient's Advocate. She is a newspaper columnist, radio talk show host, national speaker, and the guide to patient empowerment at About.com.

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