Communicating about Cancer: The Art of Self-Disclosure

Lisa Forster - Tuesday, 18 July 2017 09:41

Social media has added another layer of complexity to self-disclosure.


*All of the people in this article are real. Their names have been changed for privacy.*

The Art of Disclosing Online

Many cancer patients and caregivers seek support online. Others use email, texting, and social media channels like Twitter and Facebook as tools to keep large numbers of people informed about their progress. However, navigating these environments can be tricky and not always as emotionally supportive as it seems.

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At age 29, Caitlyn Green considered her life to be perfect. She had strong family ties, a large circle of friends, was almost seven months pregnant, and had just received a job promotion. Then she felt a lump in her breast. It had better not be cancer she remembered her husband saying, half joking. But it was.

The radiologist casually dropped the news while Caitlyn was alone in the ultrasound room. Devastated, Caitlyn asked for her husband but was told he had to stay in the waiting room. In the past, that might have been the end of the conversation. Not anymore. Caitlyn texted her husband: “Come back here now!”

Like many people today, Caitlyn has spoken about her cancer face-to-face and online. She has used texts and her blog to inform her large circle of friends, family, and coworkers about her diagnosis, chemotherapy, the loss of her hair, the birth of her daughter, her double mastectomy, and her radiation treatment.  Talking about cancer online can connect people in similar situations and help them share information. It can raise public awareness and reduce stigmas associated with certain cancers and treatment. It can help people feel like they aren’t alone. Through strong online social networks, individuals can hear words of encouragement during tough times, something Caitlyn has experienced.

Katrine Bellamy has also seen the benefits of online communication. After her son was diagnosed with cancer, Katrine started a blog to share her feelings and received positive feedback from readers. “I was pretty blunt about how I was feeling. I couldn’t say these things to people, but I could write about them.”

However, online self-disclosure comes with risks as well. There are privacy issues to consider. Comments from others that are posted online can lack empathy, lay blame, or offer unsolicited advice on treatment or miracle cures. If members of a person’s social network don’t respond to posts, a person can feel rejected or alone. Early studies show that people tend to ignore Facebook posts that are perceived as depressing. So, individuals with posts that others may consider too sad or negative may not receive the emotional support they seek. Another issue to consider before self-disclosing online is that interactions can potentially be viewed by many people and shared with strangers. Social media posts can have a long shelf life. Less than supportive comments can make a person feel publicly embarrassed.

Caitlyn hasn’t used her blog to share her feelings or her fears about dying from her breast cancer. It’s not the place where she bares her inner soul, although Caitlyn has read blogs that focus on the darker, sadder moments of a person’s cancer journey.

“It’s depressing,” said Caitlyn. “I want to be positive.”

Although her blog offers information about her cancer journey, she prefers to share her feelings in person or on the phone with her closest friends and family. She has spent hours talking to her parents about what scares her. “They acknowledge my fears,” she said. They calm her down, and they provide support. “They’ve said to me several times, ‘We’re proud of you. You’re doing so well.’”

If you choose to use social media to communicate news about cancer, consider the channel:

  • Which channel of communication would be most appropriate?
  • What are the pros and cons of each channel?
  • How might intimate friends react if they learn about a cancer diagnosis or treatment online rather than in person?

Also, if you prefer not to use social media, consider the social media habits of the people you tell. Are they likely to share personal details about your cancer journey online? Will they respect your decision to stay offline?

Using Social Media Wisely

On how often to post…As a guide, experts suggest posting to social media about once a day to keep a following without annoying your followers. Brief updates on Twitter are much different than longer shares on Facebook.

On how much to post…Do you tend to tell a story with drama before saying at the end that, in fact, everything is okay? This is called “burying the lead.” Many people won’t read to the end to know you’re okay.  They may mistake what you’re saying. Get to the point quickly and give the details after.

On looking for support, approval, or validation…Do you sign on to social media when you are looking for support in low times, approval of decisions, or validation of your values? Social media can be a good place to seek support but sometimes this isn’t what’s received. This can be disappointing. Another option is to have coffee with a close friend in person.

On the risk of losing your privacy…Know that anything you post may become public for a very long time. It also may be re-posted by others. Only post information that you are content sharing with the world.

On dealing with unexpected responses…Posting on social media may put you at risk of getting unhelpful advice, annoying views, or unfitting reactions. Consider whether you are prepared to deal with these close encounters of the unwanted kind.

On sharing other people’s news…Try not to post someone else’s personal information online unless he or she has given you permission and shared it themselves. Imagine finding out about your brother’s hospital visit through your sister-in-law’s mother’s best friend’s social media account.

Strategies for Talking about Cancer             

Anyone who has been touched by cancer knows it will be a topic of conversation at some point. These tips can help you prepare for questions, comments, and questions from others:

  1. Prepare ahead of time. Mentally walking through common questions you might encounter can help prepare for questions that are provoking.  Sometimes it’s hard finding the right thing to say to these questions.
  2. Know your trigger points.  What gets you upset? What’s hard to discuss? Think about how you might respond in those situations.
  3. Encourage the people you love to share their feelings. However, keep in mind that pressuring another person to talk is ineffective. You can try to start a conversation by asking: “Would you like to talk about it?” “How are you feeling?” “What are you feeling?”
  4. Share your feelings.  Find someone who makes you comfortable and can provide support. That person may be a family member, friend, coworker, support group, or counselor. Katrine Bellamy received support through an email exchange with an acquaintance whose mother was dying. She’d write about her feelings. He’d talk about his mom. “It was two parallel conversations, but it was the most helpful thing. I didn’t want anyone to get upset, or talk to someone who felt like they had to fix things.”
  5. Identify specific ways people can help you. Often people want to help but they’re not sure how. Having a list of specific tasks on hand can make it easier if someone asks how they can help.
  6. Don’t force self-disclosure. Sometimes there’s nothing to say. Don’t feel you have to talk to meet someone else’s expectations about how you’re supposed to react.
  7. Consider the risks and benefits of sharing information online. Think about who’s in your social network and the possibility that strangers might see your information. Do you want to talk about your feelings?  Do you want to stick with basic information? Are you a glass half-full or half-empty kind of person? How do people in your network tend to respond to posts that reveal fears or sadness?
  8. Keep a private journal. If you have difficulty disclosing to others, a private journal may be helpful. 

The Communicating about Cancer Series was written as part of a research grant awarded to Klein Buendel by the National Cancer Institute (CA144235).

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