The Importance of Accurate Health Information

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Health information, especially information found on the Internet, plays a big role in the lives of people with lupus.

There are pros and cons to obtaining health information online.

The Benefits of Finding Health Information on the Internet

One of the biggest advantages of the Internet is that it makes information accessible to patients. Decades ago, we could not access academic articles and pieces written by reputable medical institutions or medical professionals as quickly and as easily as we do now.

For example, have you ever done an Internet search about a health symptom in an attempt to diagnose yourself? Or to learn more about a health condition, including lupus? Or to figure out the side effects of your medications, or what your medications are even for? Have you met, "Dr. Google"?

Sometimes when people are diagnosed with lupus, they are left wondering, What is lupus?

They want (and should) learn more about the disease – to understand what it is, how it could impact them, lupus symptoms, how to manage lupus and how to cope.

Searching the Internet for health information starts before getting a lupus diagnosis, however, especially if you've gone from doctor to doctor and have yet to get an accurate diagnosis.

When you finally get diagnosed, you learn that managing any illness, including a chronic illness like lupus, requires juggling even more information.

For example, you start to become familiar with long and strangely spelled words  (like, hydroxychloroquine), or different types of lab tests with funny names (You had a positive antinuclear anti-what?).

Being able to advocate for yourself as a patient at the very least requires that you know what these words mean so you understand what medication your doctor is prescribing you and why. Understanding lupus is important so you know what is going on with your own body.

The Importance of Finding Accurate Health Information

The Internet contains an endless universe of information – some legitimate and some not.

The old saying, "Knowledge is power," is true.  But this is only true if the knowledge is accurate. When it comes to your health, there is no room for inaccurate health information.

The importance of finding accurate information cannot be overstated.

  • Anyone can make claims about anything online, including about health and medicine. Take the hoax emails and articles that went around stating that the well-respected U.S. hospital, Johns Hopkins, found ways to cure and prevent cancer. Thankfully, the hospital clarified that the email was a hoax and provided accurate and true information to counteract the false information that was being spread.

    This type of false information is dangerous. It can lead people to make changes to their treatment – changes that can do significant harm. It can also perpetuate suspicion of doctors and pharmaceutical companies – that there is a conspiracy to keep patients sick and keep real and natural cures away from them.
  • Another concern is the tendency for people to find health information in extreme forms. Have you ever heard a joke along the lines, "I searched the Internet because I had a headache and now I'm pretty sure I have a brain tumor." This is not to make light of brain disease whatsoever but to highlight that there is a tendency for some websites to portray health information in such a way that it can cause alarm and unnecessary concern.
  • Furthermore, while it can be a benefit to have so much information so readily available, it can be hard to navigate through it all. Where does one even begin? How do people choose which websites to visit and which to trust? And some of the most reliable ones might be written at a level only medical professionals can understand, which can be both confusing and discouraging.
  • It's understandable to want to try new things, to think outside-of-the-box if you're having strange symptoms, dealing with harsh medication side effects, or your medication isn't working, for example. But you owe it to yourself to make sure that the information you are finding is true and delivered in a way that is easy to understand.

The Internet is also filled with good, helpful information that can help empower you by increasing your knowledge and understanding about lupus and your health, in general. Use it wisely!

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