To Share, or Not to Share
In the last few years, we’ve seen millions of people, from celebrities to classmates, live their lives out loud on Facebook, Twitter and other social media sites. But when disaster strikes, how does a person decide what to share and with whom to share the information?
Ultimately, the decision should rest squarely in the hands of the person who is sick. In the case of an ill minor, the decisions rests in the hands of the parents. While our first impulse might be to log on to to Facebook and announce “#Cancer sucks, and Bobby has it”, it’s probably not a good idea. Especially if ‘Bobby’ is your husband and you haven’t discussed it with him yet. Or even worse, if ‘Bobby’ is your cousin’s child and your cousin has no idea that you’ve announced his child’s medical condition to the entire world.
When my husband, Pedro, received a diagnosis of non-Hodgkin’s Lymphoma almost 14 years ago, Mark Zuckerberg hadn’t even finished high school and Jack Dorsey had yet to create Twitter or tweet about anything. Social media consisted of emails and local gossip.
[shareable]Fourteen years ago, ‘social media’ consisted of email and gossip. #caregivers [/shareable]When we broke the bad news to family and close friends, we either did it in person or called them. We emailed others who we thought would like to know about the diagnosis.
At first, it was easy to keep people informed about Pedro’s fight. Gossip and the occasional phone call did the trick. Unfortunately, when his condition worsened and we had to travel over a thousand miles away from our local support network, information sharing got complicated.
From Mild to Wild
Phone calls to our local pastor and my parents (who had moved in with us to take care of our young children) kept people informed of our prayer needs and Pedro’s ongoing condition. Unfortunately, this word-of-mouth method of passing on information resulted in rumors of Pedro’s eminent demise (though no fault of either our pastor or my parents)—prompting one of my daughter’s classmates to say to my daughter, “Hey, when your dad dies your mom can marry my dad then we’ll each have two parents.”
About this time, I purchased a laptop computer that I carried with me and kept hooked up to the phone line in Pedro’s hospital room (wireless was relatively new). In this way, I could send out emails with up-to-date alerts as to how Pedro fared. Unbeknownst to me, many people forwarded my emails to their friends, and before I knew it I got emails from strangers in other states and even countries asking to be added to the email list or just dropping me a note to let me know they were praying for Pedro.
Also unbeknownst to me, someone back home started a fund to help our family out. The fund allowed our girls to visit two times during Pedro’s illness—once at very short notice when the doctors advised that the family gather to say their goodbyes.
Social media has undeniable power and clout and it can play an important part in helping you, the caregiver, maintain your sanity (it’s much easier to write an update than it is to answer numerous phone calls) and build a community of boosters who will support you during your season of caregiving.
Five Tips for Using Social Media in a Crisis
1. Decide who will keep people informed.
Have a discussion with the person who has cancer and ask them what they want. A close friend who had helped us during Pedro’s illness received a cancer diagnosis several years ago, and she chose to act as gatekeeper to information (her husband had no interest in social media, while she already had a presence online).
2. Choose a social media source for sharing information.
One of my former students enlisted her entire Facebook network to cheer her on in her fight against breast cancer. Other friends from a different generation have chosen to form private, invitation-only groups. The following resources should prove useful:
- Caringbridge.org offers free, personal and protected sites where family members can visit and leave messages of support. The personal site creator can share blog posts and approve those who want to join the site. Caring Bridge also offers a support planner that caregivers can use to organize family and friends who want to volunteer.
- Facebook.com offers a free social media account. Be judicious with this powerful tool, and pay close attention to privacy settings unless your loved one wants the entire world to know about his/her latest bout with vomiting. You can also use this tool to start a private group.
- Lotsahelpinghands.com is another free service offered to caregivers. Its primary purpose is to match volunteers with those in need and to help caregivers build a community to help them in their season of caregiving.
- The phone tree, an old-fashioned but effective method of communicating whereby you enlist the help of several key people who commit to calling people on a list when there is a need to ask for help, prayer or give information. Many faith communities have a phone tree system in place—if you are part of a faith community, check with the leaders to see how the phone tree works.
- Email updates still serve as an effective way to keep key people informed.
3. Set boundaries and guidelines.
In retrospect, I don’t think I would have done anything differently. Neither Pedro nor I minded that people from around the world knew about his condition. Whether they were Christian, Jewish, Buddhist or atheist—it felt wonderful to know that people cared. Depending on the wishes of the person you are caring for (or, in the case of a minor, the wishes of both parents), you can limit access to the information you share. Do this by controlling who sees your posts or by including a note at the beginning of each email asking that those who are privy to the information not pass specific information on to others.
4. Get the word out.
Bad news travels fast, so this should pose no problems. Set up an automatic response to all emails informing people that you will be unavailable for a time. Direct them to your caringbridge site for further informaiton (remember, YOU can control who joins sites or groups). You can also prepare a statement and link to text back to those who text you for updates. The same goes for voicemail greetings. I hate talking on the phone, so I’d much rather leave a voicemail message asking people to check out the Internet site. This frees me up to focus my attention on my loved one.
5. Don’t be afraid to ask for specific things.
The power of social media in creating a support system lies in your ability to ask. Generous people will respond. Ask for specific things. At one point, Pedro’s white blood cell counts weren’t going up at the same time he had a blood yeast infection. I shot off an email asking people to pray that his white blood cell count would go up. Ask for volunteers. If you need someone to take you to the airport or a doctor’s appointment, or babysit your children, don’t be afraid to ask.
[shareable]A support network plays a key role in helping #caregivers and patients alike. 5 tips to get you started.[/shareable]
Don’t let fear keep you from reaching out to others. If you have other ideas about creating a community of support, please share them with us by commenting below.
[callout]Inspire Me Monday Instructions
What’s your inspirational story? Link up below, and don’t forget the 1-2-3s of building community:
1. Link up your most inspirational post from the previous week.
2. Visit TWO other contributors (especially the person who linked up right before you) and leave an encouraging comment.
3. Spread the cheer THREE ways! Tweet something from a post you read, share a post on your Facebook page, stumble upon it, pin it or whatever social media outlet you prefer–just do it!
Please link back to this week’s post or add the button to your post so that we can spread the inspirational cheer :). [/callout]
Join the Challenge!
Join the 5-Day Self-Care Challenge for Caregivers and start taking care of YOU!