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Are Online Communities Good for Your Health?

By Marisa Weiss, M.D. on September 21st, 2016 Categories: Uncategorized

Connecting on a regular basis with people we care about is good for our health, as I talked about in a previous TPLG column, Family and Friends Can Benefit Your Health. People who share close personal connections with other people are more likely to recover from serious medical issues such as breast cancer and heart attacks. They also tend to live longer than people without strong social ties. Still, with today’s technology, a lot of us connect with people online. Social media is booming: 1.2 billion people worldwide are on Facebook and a half-billion are on Twitter. Websites on almost any subject you can think of attract people with similar interests. So I started wondering: Can online social connections also help your health? What about health websites, especially ones that focus on people dealing with cancer, like Breastcancer.org?

Because online social connections are still relatively new, the research looking at their possible health benefits is also very new. So far, the research has tended to study small numbers of people or unusual communities, such as mothers of children with rare genetic disorders. Many studies track white, college-educated women with jobs who use the internet. We don’t know if the results apply to everyone because the research is so limited. Still, a few studies suggest that online connections may offer some health benefits. But the studies also point out some concerns about the accuracy of online information as well as possible risks associated with having only online social interactions.

In this column, I’m going to talk about some of those benefits as well as the concerns.

Benefits of Online Community

Ideally, you have some strong in-person connections, which are proven to be good for your health. But many people today have online social connections as well as real-world relationships. These online connections can be helpful, too, especially when real-world connections are not possible.

For example, people who find it difficult to leave the house because of illness or mobility issues can still chat with friends and loved ones online. The internet also helps people who are looking for others living through similar journeys. For example, people who have been diagnosed with rare conditions can find others who are experiencing the same thing, even if they live far away. Young people who have been diagnosed with cancer can find other young people with the same diagnosis. A study followed young adults diagnosed with cancer who talked with each other via a community website. They said it helped them to feel less alone in their cancer experience. Also, 25% of them brought their online conversations off-line, building on those relationships.

Online support is also available around the clock. If you’re awake at 4 a.m., you are more likely to find others who are also awake and want to talk in an online community.

On Breastcancer.org, people with breast cancer really value stories from other patients. Participants in a Dutch study said that other women’s stories “provide them with emotional support, information, reassurance, and practical advice.” That’s exactly why we have a team dedicated to the Community Discussion Boards on Breastcancer.org — so you can talk with other people who are facing similar experiences and issues.

Types of Online Communities

Social media sites such as Facebook and Twitter can provide general social interaction with people you know personally or with people from around the world who share your interests. To find Facebook groups on certain topics, you can search at the top. For example, you could search for “breast cancer support.” If you find a group that looks good, click the Like button and its posts will appear in your newsfeed. You can also go directly to a group’s page to read all of its posts. Besides the Breastcancer.org Facebook page, I like Breast Cancer Now, Breast Cancer Awareness, and Breast Cancer Fund. One thing people like about Facebook is that you can see if members of your community are online, and they may be able to reply in real time. Sometimes that is not true of message boards or list servs (automated email lists).

Twitter seems better for sharing quick tips or bits of information than for offering a true community of support because your ability to talk back and forth with someone else is limited to just a few words at a time. You can follow people who tweet information about breast cancer or about their experiences with breast cancer. Again, search for “breast cancer” to find people. You can follow @Breastcancerorg.

Websites on a particular topic such as general health or a particular disease can be good places to find information and community. They tend to attract people who want information, help, emotional support, and the chance to talk with each other or to influence public opinion.

Our website, Breastcancer.org, is a great example. Our mission is to provide you with the most reliable, complete, up-to-date expert information about breast cancer and breast health so you can get the best care possible. We also have a Community Discussion Boards area where you can talk to other people who are affected by breast cancer. You can access the boards by looking at the top right of our homepage and clicking on Community. The Breastcancer.org Community is made up of more than 165,000 people — so if you want to connect with someone like you, you’re likely to find that person on our site.

Concerns

When looking for community online, it’s important to find people you can trust. An important part of that trust is whether the information they share is correct. Because breast cancer is a common disease, there is a lot of information on the internet about it. But it’s not all helpful, and it can be hard to know which information is true. Most reputable websites have an About Us link. Check the link to see who is running the site. Is it a group with a good reputation? Some sites support ideas that doctors consider dangerous. For example, there are sites that promote anorexia as a lifestyle, not a disease. Other sites say that that vaccines cause autism, an idea that many, many scientific studies have shown to be false.

At Breastcancer.org, all of our information is reviewed and approved by oncologists, other doctors, and nurses. We have an internationally recognized Professional Advisory Board made up of people who work in all areas of breast cancer research, diagnosis, and treatment, as well as psychological and survivorship issues associated with the disease.

It makes sense to ask your doctor or medical office to recommend high-quality online support groups and information sites. Or you can ask if a particular site you’ve found is a good one.

The personal information posted in our Community Discussion Boards is monitored by our community moderators, but remember: Even doctor-approved and moderated sites like Breastcancer.org are not able to read and correct all the information that other people may give you in Discussion Board areas. People tend to deeply believe that what they did is right and may try to persuade you to do the same thing, even though you and your situation may be entirely different. Also, someone might post information that’s really trying to sell you something. It’s great to bond, vent, and even cry with another person over a shared experience like breast cancer. There is so much to learn from each other as well. But if another Discussion Board user recommends a course of treatment for you or an alternative remedy, talk to your doctor first to find out if that approach would work for you.

One other thing to be cautious about: Studies suggest that online social activity is not healthy if it takes time away from real-world relationships. People who use the internet a lot instead of talking face-to-face with others and getting social support in their day-to-day lives have a higher risk of depression, according to a recent study. Another group of researchers studying Facebook found that heavy use can increase social isolation and make people more dependent on computers for social connections, even replacing real relationships with online ones.

Another recent study found that some people don’t feel as safe sharing information online as they do in person because they cannot see the other person’s face and body language. Some people were worried about privacy and wanted to be anonymous. A different study of people 65 and older found that they need face-to-face interactions to feel supported. This could be because, in general, older people haven’t spent as much time online as younger people and are less comfortable with this method of interaction.

If you’re feeling uneasy about sharing your information, you may be able to join some sites without using your name. Most sites don’t require your real name, but you do have to use a user name, which can be made up, like “MotorcycleBetty.” Given these concerns, it’s better to get involved with a community that you trust because you’ve checked out who’s behind it and you respect them, or because a friend you trust has been using it for a while. If face-to-face contact is important to you, you can use the internet to video chat with family and friends who live far away with programs such as Skype or FaceTime.

But what if you don’t have a computer or smartphone, or you don’t know how to go online? Most public libraries have computers that anyone can use, and some communities have classes or volunteer-led programs to help teach you. Your doctor or medical office might have information on such services in your area. But if learning how to use a computer or smartphone feels too hard at this stage in your life, you might be better off focusing your energy on real-world friends and family.

Here are some links to community areas of the Breastcancer.org site:

Breastcancer.org’s Community Discussion Boards

Our members’ stories

Marisa Weiss, M.D.

Marisa Weiss, M.D. is the founder, president, and chief medical officer of Breastcancer.org, the world's most trafficked online resource for medically reviewed breast health and breast cancer information, reaching over 14 million visitors per year. A breast cancer oncologist with over twenty years of active practice in the Philadelphia region, Dr. Weiss is regarded as a visionary advocate for her innovative and steadfast approach to informing, empowering, and treating patients with breast cancer.

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