Sharing an Illness on Social Media

Just reading the string of questions can feel overwhelming!

You may not have to imagine this scenario – you may have lived through it. And although you might have appreciated the concern and support, you might also recall that your feelings of appreciation were sometimes clouded by the frustration of having to answer these questions on repeat.

Fortunately, there is a better way. Sharing regular updates on social media can streamline the process and allow for the patient and family to concentrate on more pressing matters.

Benefits of sharing an illness on social media

When deciding whether you want to use social media for serious announcements or progress reports, consider these benefits:

1. Spend less time communicating. Your family and friends are already likely connected to you on social media. Looping them into regular updates may be as easy as adding them to a “group” where messages, pictures, and support needs are posted. They can check for updates as needed, without having to interrupt you or your sick loved one during a difficult time.
2. Easily share and coordinate ways that people can help. Dealing with a serious illness or injury can take a physical, mental, and financial toll. When friends or family are in need, we typically look for ways that we can support them. Social media, such as a Facebook group, provides a centralized place to post links to fundraisers like GoFundMe, meal trains, or applications such as SignUpGenius and CaringBridge. SignUpGenius provides a platform where friends and family can sign up to help with specific jobs, such as childcare, house cleaning, grocery shopping, and more. A similar service, Caring Bridge https://www.caringbridge.org/how-it-works, is designed specifically for sharing ongoing news updates as well as communicating ways people can help and tools for planning that assistance.

The challenges of using social media to communicate health updates

As we all know by now, social media has its downsides, even for sharing personal health news.

1. If you share on social media before telling close friends and family, they might hear the news through the grapevine – a recipe for hurt feelings.
2. Some friends and family may not participate in the social media platform you use. For example, if you have a relative who is not on Facebook, they may feel left out if all of your updates and news are posted in a Facebook group.
3. Acquaintances who see the news on Facebook may push for more information than you have the time or willingness to share.
4. You may open yourself up to unwanted input, advice, questions, or comments from well-meaning members. People – even caring people – sometimes are uneducated or insensitive in their response to hardship, so you may hear responses you prefer not to hear.
5. Scammers can see public posts and take advantage of the situation.

Tips for sharing an illness on social media

Communicating information in one place online is more convenient than a litany of one-on-one conversations. When sharing:

• Set friendly ground rules. For example,
  • “We’ve done our research on the illness and we trust the doctors we’ve chosen, so we thank you in advance for not sharing your opinions or alternative treatments.”
  • “We will be busy attending to essential needs for a while, so forgive us for not responding to all inquiries.”
• Offer other helpful information:
  • If and when visitors would be welcome
  • If you welcome cards or flowers or if you prefer donations to a cherished cause
  • If you don’t want people to share this information outside of the group
• Bring attention to essential information. If any of the above information is especially important to you, use a pinned post that stays at the top of the page to keep it front of mind.
• Privacy. Consider forming a private group, only inviting the people you choose.
  • On Facebook, a private group can be more useful than a group chat, since a Messenger chat can inundate members’ notification feeds.
  • Insurance fraud and medical identity theft can occur if enough of your personal information is gleaned from your posts. Using privacy setting or an alternative site such as Caring Bridge will accomplish your goal of sharing and gathering support without some of the privacy concerns of social media.
• Offer specific ways people can help. The more detailed the request, the better. If you need meals on specific dates, make that known, and be sure to mention food allergies or aversions. If you need a grocery delivery of easy-to-prepare meals, specify that. The more specific you are about your needs, the more efficiently your loved ones can help.
• Tune out when needed! If social media posts get too much chatter – especially unwanted chatter – you can turn off comments or notifications – or leave the platform for a while.
• Assign a point person. Someone who isn’t as involved emotionally and in day-to-day care needs may have more time for communicating updates.
• If you’re the point person, be cautious. Post only the updates that they have asked you to share. If they are not in a position to specify what information is shared, be sensitive to the wishes of their family members or close friends. Exercise caution when choosing pictures to share, and be respectful and sensitive to the emotional needs of those who might be upset or frightened by seeing detailed pictures.

Related: Announcing a loved one’s death on social media

More tips for sharing a death on social media

Words of wisdom to friends and family

If you are the person following the news, remember to cut some slack to those who are involved and don’t take it personally if they do not respond to your inquiries. They are going through some really tough times and they need your understanding, not your criticism.

Social media can be a helpful tool both for sharing news and for gathering support for yourself or a loved one dealing with a health crisis. Use it wisely so it eases the difficult journey.