Infertility Research and Your Mental Health: Does the Internet Help or Hurt?
May 12, 2020
Infertility is more common than most people realize. Nearly 10% of women in the U.S. ages 15 to 44 have difficulty getting pregnant or staying pregnant. Infertility is commonly defined as the inability to get pregnant after trying for 12 months (or six months if a woman is 35 or older) without medical assistance.
When a couple finds themselves struggling to conceive, it’s natural to turn to the internet as a resource. This can lead to both positive and negative outcomes.
Researching fertility properly on the internet can prepare you with base knowledge on the subject, which leads to more in-depth conversations with health care providers. It can also lead to increased familiarity with medical terminology. Additionally, people experiencing infertility can find support groups and access to a wealth of helpful resources online.
However, stumbling upon information from untrustworthy sources or without a balanced approach might leave you misinformed. It can also result in less productive communications with health care providers.
Another byproduct of internet and social media use when you’re in the midst of fertility challenges is its potential mental health impact. It can be a fragile time to be reading stories of others’ fertility experiences, good and bad. Sometimes, it may feel like the content you consume on the internet is overwhelming; there can be a steady stream of pregnancy announcements, newborn photo shoots, major childhood milestones and kids’ birthday parties. You might end up leaving the time spent on the internet in a more anxious or sorrowful place than when you began exploring it.
So it’s helpful to understand how the time you spend online searching for infertility-related topics might affect your mental health. You may also benefit from learning how to get the most out of both your infertility research and the use of support groups so you can feel more educated and empowered by using the internet as a helpful tool.
Impact of infertility research and the internet on mental health
Infertility itself is an extremely challenging thing for people to go through. It can feel all-encompassing because of the toll it can take on so many aspects of life: socially, emotionally, financially and spiritually. Research shows that anxiety and depression are the most common symptoms among fertility patients.
Megan Edwards Collins, an associate professor in the occupational therapy department at Winston-Salem State University in North Carolina, published a study in the Journal of Reproduction & Infertility on the physical and psychological tolls of an infertility diagnosis. Collins’ interviews with women revealed infertility has impacted every aspect of their lives and that it’s intensely isolating. Collins told The Los Angeles Times, “Infertility is very lonely. You feel responsible, you blame yourself like you’ve done something wrong.”
The physical and emotional demands of infertility treatments add to the strain on mental health. Infertility specialists have done studies assessing women at presentation for in vitro fertilization (IVF) and then at the end of a failed IVF cycle. They found that women presenting for IVF were more depressed, had lower self-esteem and were less confident than a control group of women not struggling with fertility challenges. They also found that after a failed IVF cycle, women experienced a further lowering of self-esteem and an increase in depression relative to pre-treatment levels.
Infertility research and mental health
The internet and social media can add an entirely new layer of mental health implications to an infertility diagnosis.
One study set out to discover if those turning to the internet for answers about infertility got their needs met, and 29.1% of those who participated reported not getting their needs met from web-based information. Even more startling, the participants who reported not getting their needs met also reported higher levels of perceived stress and depressive symptomatology.
A similar study’s objective was to determine if online support for fertility is advantageous for participants. The results showed that over half of the participants considered their experiences with online fertility support to be unhelpful. Participants reported the most common disadvantages were reading about negative experiences (10.9%), reading about other people’s pregnancies (8.8%), inaccurate information (7.8%) and its addictive quality (5.8%). One takeaway was there should be more oversight over these online support groups by health professionals and community moderators to improve the experience.
In fact, a study published in the Fertility and Sterility Journal found that many websites run by fertility clinics are not meeting health information guidelines suggested by the American Medical Association (AMA). This same study revealed that when fertility patients relied on the internet as the only source of infertility support, they experienced higher levels of depression.
Differences between men and women and their online experiences
Men and women process the experience of internet research and support differently, according to studies. Relative to men going through infertility, women going through infertility are more apt to assume the role of information gatherer since most infertility treatment procedures have to do with the female body (regardless of the cause of infertility).
Another study found that 74% of women and 68.4% of men used the internet to look for information related to infertility. In this study, men searched for information related to fertility drugs used in treatment significantly less than women. The most common topics women search for online are scientific literature, their physician or medical team, diagnostic tests, medications used in treatment, clinics where treatment is offered and information on others’ experiences with infertility.
Success stories and mental health
Many people going through infertility might read posts and updates on social media that have to do with pregnancy and parenthood successes and feel overwhelmed. As shared on Seleni.org, Tara Simpson, PsyD, a psychologist at Shady Grove Fertility Center in Baltimore, MD, describes the dilemma her clients face when presented with baby-related content online: “What are you supposed to do with it? Do you ‘like’ it? Do you ignore it?”
And Marni Rosner, a New York-based psychotherapist who works with women and couples coping with infertility, also shared with Seleni.org that negative feelings about how we should react to others’ success stories “may be threatening to how a woman has viewed herself — as a good friend or a supportive sibling.” But Rosner tells her clients: “Don’t feel bad about taking care of yourself.”
Some coping strategies for those going through infertility to protect their mental health when they confront online pregnancy success stories include:
- Go offline completely, or take breaks from social media
- Be selective about how much you share with others about your infertility journey
- Connect with people who understand, such as through online or in-person support groups
- Make time for self-care
- Understand that what you see on social media is curated, and you’re never seeing the full picture
In addition to these strategies, there are many more strategies for how individuals experiencing infertility can have successful experiences with the internet when it comes to research.
How to get the most out of infertility research
Some internet sites dedicated to the topic of infertility are incredibly well researched and well written. However, others may contain information that may be neither factual nor up to date. Since there’s no criteria for posting information on the internet, individuals are at liberty to post a homemade remedy or anecdotal tale of how they conceived. As a result, couples experiencing infertility may read things on the internet and assume it has the same level of authority as information from trusted sites.
This is why it’s important to be intentional and cautious about online research. The abundance of factual errors is also the reason why professional organizations have become important disseminators of information on the internet. One of the most comprehensive sites is the International Council on Infertility Information Dissemination, Inc. (INCIID). This site offers basic and advanced articles about specific, infertility-related topics, as well as bulletin boards. Other trustworthy sites for information include:
To accurately assess the credibility of other websites you may come across when searching for infertility information, here are some tips:
- Does the website list who wrote the article/resource so that readers can look up the author and research his/her credentials?
- Does the website date all of the research so that readers can determine if what they are reading is timely and relevant?
- Does the website cite all sources of the information presented so there is no question as to how it was generated?
- Does the domain end in .gov or .edu? (These are websites run by government organizations and educational entities and are generally very reliable.)
- Does the website appear clean, professional and well-designed?
- Is the writing on the website of high quality, with no misspellings or grammatical errors?
Of course, you can follow these tips and still find yourself scrolling through websites that lack credibility, so it’s wise to also ask your healthcare provider what sites they recommend for reliable sources of information.
How to find support groups
Online support groups can provide encouragement for those experiencing infertility. Like with all support groups, the primary beneficial outcome is to reduce the feelings of loneliness and isolation many people feel when they are going through infertility challenges. Jeremy Groll, MD, of SpringCreek Fertility, told Premier Health that “talking to others who are in a similar situation” can help with the stress of infertility. Support groups do just that. “When you find others you can relate to, who understand what you’re going through, it’s incredibly helpful to listen to their stories and to share your own story,” says Groll.
Benefits of support groups include finding emotional support, gaining insights from others, learning more about infertility, discovering tips and tricks and helping others.
A good first step to take when trying to find either in-person or online support groups is to talk to your doctor. Additionally, here are some organizations that can help provide information about finding support while dealing with infertility:
- Resolve, The National Infertility Association
- INCIID, The International Council on Infertility Information Dissemination, Inc.
- Tinina Q. Cade Foundation (TQCF)
- Fertility for Colored Girls
- Freedom Fertility Pharmacy
- Fertility Lifelines
Another way to get online support without formally joining a group is to consider newsgroups and bulletin boards. Both are discussion forums that use public postings for passing along information.
Additional infertility resources to explore include:
- The American Society for Reproductive Medicine (ASRP): A voluntary, non-profit organization whose mission is to advance knowledge and expertise in reproductive medicine and biology.
- American College of Obstetricians and Gynecologists (ACOG): Provides fact sheets on many different women’s health issues, including aspects of infertility.
- Society for Assisted Reproductive Technologies (SART): The main organization of professionals dedicated to the practice of assisted reproductive technologies (ART) in the United States.
- Centers for Disease Control and Prevention (CDC): CDC’s guide to assisted reproductive technology contains information on preparing for assisted reproductive technology, reports on its success rates and provides additional resources. The website also offers general information about infertility.
- Path to Parenthood: An inclusive organization committed to helping people create the family they desire by providing outreach programs and timely educational information.
- My Egg Bank North America: A network of high-quality infertility centers that provide frozen donor egg bank services to patients across the United States and Canada.
- Donor Egg Bank USA: A network of the most comprehensive frozen donor egg programs in the United States.
- National Library of Medicine (NLM): MedlinePlus, a site supported by NLM, offers detailed descriptions of medical conditions related to infertility and links to information sources compiled by NIH.
- Fertility Savings: A free and confidential educational service offering customized information and support to people with fertility challenges.
- Growing Generations: A company passionately dedicated to the vision of creating life.
- Circle Surrogacy: An organization that helps couples and individuals build the families they deserve. They bring together intended parents, surrogates and egg donors and strive to achieve a world in which infertility and sexual orientation are no longer barriers to their families of choice.
The bottom line
The internet provides a seemingly limitless amount of information to infertility patients. This access offers the opportunity to feel more knowledgeable, empowered and to realize you are not alone. As long as the internet does not replace in-person practitioner care and is utilized with discretion and in moderation, it can be a beneficial resource both for information and for emotional support for those navigating infertility.
Tricia Arthur is a freelance writer based in Denver, CO where she lives with her husband, four children, and guinea pig. Her writing centers around mental health, neurodiversity, and parenting. You can find her published work on ScaryMommy.com, PsychCentral.com, HerViewFromHome.com, Additude.com, LoveWhatMatters.com, Freshome.com, and Reviews.com. When she is not schlepping around her kids and their charming friends, she can be found reading, running, meditating, latte-ing, and navigating the rugged terrain of her and her family members’ mental healths.