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6 tips for communicating about illness in the social media age

When Multiple Sclerosis entered our lives there were no tears. There were no antiseptic hallways or swishing lab coats. There were my parents and a plaid brown living room couch and medical terminology no one understood like “chronic-progressive” and “synapse misfires” and “problematic brain lesions”. It was the Fourth of July, 1994, and we had just walked the six blocks home from our Detroit suburb’s annual parade. Our small ranch burned like an oven, my eleven-year-old fingers sticky with the chocolate tossed at me by the ruby red-lipped sequined dancers I hoped to one day become. I tapped my sandals together in anxious anticipation for the meeting to conclude. A friend’s pool awaited; they were playing Marco Polo. My sister, nine at the time, poked me and I poked her back, and after an ensuing struggle succeeded in pushing her off the navy blue recliner we had simultaneously claimed stake over. My father mumbled something about the lawn and slammed the front screen door behind him, my mother sighed and made her way back to the kitchen to finish washing the dishes. If she walked any differently, off-balance or a tick more slowly, I didn’t notice.

In 1994, verbal conversation was still the primary method for sharing personal information. In other words, if you had to tell somebody something—especially something serious or life-changing—you called them. Email had popularized but was not generally used for such matters. Text was non-existent. You called them, possibly left a voicemail on their home answering machine asking them to call you back, and waited for the phone to ring. In the best case scenario, you sat friends and loved ones down in person and told them what was going on. Word traveled over time, and you didn’t worry much about having to handle updates to “the world”.

At risk of sounding ancient, communication was much easier “back then”. Daily interactions involved only your immediate family, a few close friends, and people you worked with. Weekends, holidays and the occasional happy hour or after-school activity were often the only times you would talk to the more peripheral people in your life, whether in person or via phone.

The pressure to communicate—and perhaps more importantly, dispel misinformation—is greater today than ever before. With 2.7 billion monthly users on Facebook and the ability to message through Instagram, Messenger, and WhatsApp, not to mention professional platforms like LinkedIn and more traditional channels like email and text, everyone seemingly has access to contact you and ask what’s going on whenever they feel like. And while you are in no way obligated to respond to unsolicited emails, messages, chats, texts or drive-bys, this barrage of (often unwelcome) questioning is best addressed with a plan.

6 key thoughts to consider when hatching your communication plan

  • Is the person to who the information pertains of sound mind? In other words—can they communicate to others themselves, or do they require assistance?

  • Are there any topics that are off-limits to disclose?

  • Are there any people who shouldn’t know about the situation?

  • Are children affected? They will understand things differently and require a special communication approach. Bright Horizons provides further resources on this topic.

  • Is your loved one okay with broad communication about the situation on social media, or would they prefer to keep private? Everyone differs in this regard so if you are unsure, best to keep matters more confidential than not.

  • Which parties are doing the communication (siblings, etc.)?

If you are the primary caregiver, you will want to designate another family member or friend as the “communication focal”. This person will be responsible for updating those who need-to-know and fielding questions that come in. They won’t be able to address everything all of the time, but having someone in charge of this aspect will free you up to focus on the more important things in life—like spending time with your loved one.

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