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Using Online Support Groups, Forums and Message Boards

Other Patients May Be Immensely Helpful to You

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Updated November 23, 2011

Find an Online Support Group

Find an Online Support Group

Photo: Microsoft Image Gallery

The access to support groups, forums and message boards is one of the reasons the Internet is so valuable for patients who want more information about their health.

All three, and other forms of social networking, are web applications that allow users to interact with each other, ask questions, provide facts or opinions, and share emotions. Unlike in-person support groups you might find in your community, most online groups allow users to remain anonymous.

Users come from all backgrounds and levels of knowledge. They may be pregnant women, men with prostate cancer, undiagnosed patients who are trying to figure out what's wrong with them, parents of children with childhood diseases, teenagers with bipolar disease or adult caretakers for elderly parents. There are thousands of topics and hundreds of thousands of participants.

What Can You Learn from Other Support Board Participants?

Your first thought might be that you can't learn much from someone who isn't a medical professional. In fact, that is far from true.

Other patients can be a wealth of information. They may be undergoing a different treatment from you, but having more success. They may know of a great online resource for the drugs you've found to be so expensive at the corner drug store. They might be able to recommend a specialist in another city when your doctor just isn't helpful enough. They may simply offer moral support, much needed for those with difficult medical challenges.

Some of these sites dig even deeper than just support. Some patient communities ask you to share your medical records to further research, allow you to communicate with providers who are working toward new treatment, or even help you get diagnosed when you are struggling with symptoms that aren't providing clear answers.

They can provide many resources to us -- but! (a big but!) -- you need to be careful with what you do with the information they provide to you.

Why? Because -- just like you -- they are not medical professionals. Even if they claim to be (and sometimes, yes, a nurse or a doctor or another provider will participate), you can't be sure they are being honest about their credentials.

When we are sick, upset, fearful, or just feeling like we are in limbo, it's easy to want to believe information that is hopeful. But you have to remember that it may not be true.

Of course, they may simply be providing information that is common sense, or which you can test yourself. For example, someone may send you a link to a prescription assistance organization or tell you what you need to do to find a patient advocate. In cases like those, you can confirm the information yourself.

Where Can You Find Online Support Groups, Message Boards and Forums?

They are found at a variety of websites. Some may be found at sites dedicated solely to providing support groups like Inspire.com, DailyStrength.org or Wellsphere. Each of these sites, and others like them, offer dozens, if not hundreds of support group options based on specific diseases, conditions, symptoms, treatment choices, prevention, mental health or general health.

Some support sites are specific to a disease or condition including dvocacy organization websites like the Diabetes Association or the Leukemia & Lymphoma Society.

Still others are found at sites like About.com where you can interact not just with other users, but with the experts, too. Each topic has its own forum area, so you can share information with others who have the same interests you do. You can begin with the Patient Empowerment forum.

If you want even more than just support and sharing the experience of dealing with your health problem, and are willing to yield information that ranges from your medical records to your DNA, you'll be interested in the patient communities that deal with that expanded information.

A Few Last Words About Online Support Groups

Similar to the warnings for the use of any social networking:

Stay anonymous. Don't use personal information that could help someone identify you. Choose a user name that sounds friendly, or represents you in some way, but doesn't let anyone figure out who you really are, where you live, or what your phone number or email address is.

The flip side of staying anonymous is that everyone else is anonymous, too. That means you have to be cautious about who you trust or don't trust to give you good information. Once you have participated for awhile, you'll learn who is who. There always seem to be some people who make it difficult for others. And there will always be people who are trying to sell you something -- another good reason for you to stay anonymous.

Do participate, and offer support to others. You may be surprised at how empowering it can be to share the information you have gathered, or stories about your successes or even failures.

Keep an open mind. People from many walks of life participate online. While you choose your friends in person based on commonalities of your age, gender, location, interests, etc -- most of those commonalities don't transfer online. The people you engage with online may have only one aspect of their lives in common with you -- the diagnosis or symptoms you share. And most of those are suffered regardless of all those other age, gender or interest-specific commonalities.

Verify any information that could affect your health. Remember, the folks who are posting alongside you are just like you -- they don't have medical knowledge or experience. If someone recommends a treatment to you, verify the information, learn what you can about it, then share the information with your doctor. Never try an alternative therapy without getting professional advice -- in person -- from someone you can identify and whose credentials can be verified. Don't begin another form of treatment without discussing it with your doctor. You run the risk of conflicts and contraindications.

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Return to the master list of types of health and medical information resources you can use in your research.

... and don't forget to make sure the information you use is credible and reliable.

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