Our Bodies, Ourselves (141 page)

The recovery was pretty intense—in order for the milk not to cause an infection, the incision had to heal from the deepest part outward. A home nurse came twice a day to clean out and repack the wound to keep it from closing up, and each time she did so, milk would spray out from deep inside my breast! But my breast healed relatively quickly—and two years later my son is still happily nursing
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There are many kinds of groups that you can join to learn about and discuss health topics and treatments. Participating in a group provides the opportunity to talk with other people in our situation, to trade ideas, to feel less alone, to motivate one another, and sometimes to learn new self-care skills. Self-help groups are based on the belief that we are capable of understanding medical information, that our health information rightfully belongs to us, and that we can learn more collectively than we can individually. When these groups are independent of health care institutions and professionals, we can freely question, challenge, and evaluate accepted medical treatments and explore nonmedical therapies and providers.

Some physicians, medical centers, and hospitals offer groups or classes on a wide variety of health topics. These groups often emphasize self-care and activities that we can do to manage our care in conjunction with our providers. Local support groups are also offered by nonprofit organizations such as the American Cancer Society, La Leche League, or the Endometriosis Association. If the kind of group you seek does not already exist in your area, consider starting one of your own.

Increasingly, women are tapping into existing support groups online. New technologies vastly expand the number of people we can potentially connect with for support and information sharing. If you have a rare condition that doesn't affect many people or if you have decreased mobility, the Internet may be your best source of support from people with similar health issues:

During my long four months of bed rest, because of my online community I always had someone to chat with who could understand my pain—other moms going through the same experience. We no longer felt alone. It was also a source of hope as we would see the “bed rest graduates” and understand that there was indeed a light at the end of the tunnel. We just had to hang in there and support one another
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Tips for finding a good support group online include:

• Look for websites that have information on the condition or topic you are seeking, and see if any groups are mentioned there.

• If you find an online group, look through previous discussions (if publicly available) to see how active the group is. When was the most recent post? How many people are involved? Does one person dominate all of the discussion? Are the participants supportive of each other?

• Before participating, take some time to listen to what people are talking about. Evaluate whether or not you feel that this is a safe space for you to share your questions, concerns, and knowledge.

• If you do find groups that meet your needs, remember that there are a wide range of opinions on any given topic and it's okay for people to disagree. Ideally, however, the conversation remains respectful.

• Verify information. Remember, people posting don't necessarily have medical knowledge or experience. Bring new information to your health care provider or verify it with another trustworthy source.

• Check the moderation policy to make sure that comments aren't explicitly censored if they don't support a certain point of view.

• Always bear in mind that once you post information, you cannot control where it goes or who reads it.

While the amount of material available on the Internet is vast, the quality of the information varies greatly. Some sites push dubious medicine, both conventional and alternative; some are concerned only with selling you their products; and some sites are biased by the drug companies, professional societies, and other advertisers who support them.

Below are some questions to ask to help evaluate the quality of online health information:

Who is responsible for the content on the site?
Any good site should make it easy for you to learn who is responsible for the site and its content. Look for a link that says “Who We Are” or “About Us.” It is also useful to understand whether the information is created by a health care provider, a person dealing with a medical condition, or a professional spokesperson, for example, so you can better judge the content. If there is no information available about who owns the site or develops the content, be wary.

Who/what pays for the site?
It is important to consider how sources of funding for a site or its content provider may affect the content. Does the site sell advertising? Does it sell products or services? Is it sponsored by a drug company? Is it funded through industry grants or donations? (Nonprofit organizations are often funded this way.) The source of funding can affect what content is presented, and how. For example, drug-company-sponsored information tends to downgrade or ignore nonmedical or nonpharmacological approaches (which are often more effective) and is slow to present innovative alternatives or preventive treatments. Try to figure out if the author(s) and site owner(s) have a financial interest in, or anything else to gain from, proposing one particular point of view over another.

Is there research to support the information on the site?
Many health-oriented websites do not provide references to support the statements made. This may be because the site is written by a patient speaking from personal experience, because a statement is generally accepted to be true, or for other, less trustworthy reasons. The presence of references to medical and scientific literature can be a positive aspect of a site, as it allows readers to track down the source material and verify the author's statements. However, a list of scientific sources does not mean a site is automatically trustworthy. For example, an organization with a political agenda (such as anti– abortion rights groups) may present references that—upon closer inspection—do not actually support the claims being made.

When was the material written or compiled?
It is important to have a sense of whether the content is frequently updated or has been updated recently. It is not always possible to determine this, and copyright dates are not a reliable measure of when individual pieces of content were last updated. Medical research can easily
become outdated; what may have been accepted in the recent past (such as routine hormone replacement therapy for postmenopausal women) may not be the current standard of medical care.

Does the site allow anyone to alter or update content?
Sites like Wikipedia allow anyone with Internet access to edit, revise, or update content according to voluntary community standards. Based on the success and popularity of Wikipedia, several organizations and companies have begun to offer health-related wiki tools. While these resources can sometimes provide balanced and up-to-date content, remember that people who offer edits and revisions may be those most motivated to share their insights—because of either very positive or very negative experiences. Company representatives or paid consultants may also alter content and may not be identifiable.

Does the information sound too good to be true?
Be wary of “cures” for incurable diseases or treatments that seem too good to be true. Question sites that credit themselves as the sole source of information on a topic as well as sites that disparage other sources of knowledge. Also be aware that terms like bio identical, herbal, or natural do not have regulated meanings and do not guarantee either safety or good outcomes.
Does the site ask you for personal information?
If so, read its privacy statement to find out if your information will be shared by others without your permission. When choosing to participate in discussion forums or other online communities where you share personal information, think about whether there are any potential consequences of the information being publicly available (such as job discrimination or insurance claim denials).

Sometimes, someone who has learned a lot about her or his own health condition or worked hard to find the most up-to-date research about treatment options will “pay it forward” by making this information more easily available to others.

These sites, usually free of financial conflicts of interest, can sometimes provide excellent, up-to-date information from a consumer perspective—a perspective too often missing from other sources of information. However, the content developers may not be skilled at understanding medical information and research literature or keeping the site updated. And they may not have exactly the same medical condition or symptoms as you, or the same values, preferences, and priorities that you bring to your health care decisions.

Also, beware of sites or social media pages that look as if they are from individual patients but are actually slick advertising campaigns created by corporate interests such as pharmaceutical companies or hospitals. In some cases, the “patient” is fabricated altogether, but pharmaceutical and device companies may also recruit real patients to tell their stories online, selecting those patients who have treatment success stories and who didn't experience or are willing to downplay negative side effects. Even on sites that purport to be patients' personal web pages, look for an “About” link or any ads or company logos, clues that the content is sponsored and potentially biased. Federal regulations now require bloggers to disclose when they receive advertising revenue, free product samples, or anything else of value, so also look for disclosure statements.

Finally, you should be aware that your online privacy could be violated by individuals who run websites or by individuals with access to your computer. For example, when you comment on a blog, the blog's administrators may be able to detect where you are located or where you work (if you post your comment using a computer at work) by looking at the IP address attached to your comment. It may also be possible for someone in your household to monitor your Internet activity using certain tools and techniques.