One of the most time-consuming activities around serious illness can be keeping interested people informed. We want to stay connected to our communities, yet day to day activities keep us really busy and making that call or writing that email or text after everything is done is just exhausting even to think about. We will offer suggestions on how to make this easier.
Almost everyone says that keeping people they care about informed is both important to them and also very time-consuming. Sometimes it is the patient doing the communications, if they are up to it, other times it may be a caregiver.
There are many ways of communication that you can consider
Blogs: Some people start blogs and share the URL so they can write once yet communicate with all the people invited to view the blog. Most blogs also offer the ability to share comments so the community can also interact.
Private Communities on Social Media: Many social media services provide the ability to create private communities where, like blogs, you can write once and reach many people. They offer controls around who may or may not comment and who may or may not participate. This can give you an additional level of security when speaking about a sensitive manner.
Phone, Text, or Email Trees: Some people set up a ‘hub and spokes’ network. The patient or caregiver communicates with a small number of people who each in turn communicate with others they know or are close to.
Condition or Disease Specific Groups: There are communities of people sharing the same issues online. These communities may understand what you are going through better than anyone and also be able to offer suggestions about what is working best for them.
Decide What You Want to Share with Whom
You may want to share more information with those closest to you and less with your larger community. It is entirely up to you. It is important for the principals, that is the patient and those closest to them, to agree on what is to be shared. Some people feel very strongly about their privacy, others not so much. There is no right or wrong way to do this; just the way that suits you best.
Challenging Situations in Communications
People Giving Advice: This is surprisingly common. You may hear about their personal experience, that of a friend, or something from the internet. Unless you have asked for the advice, you are free to thank them and then ignore it. Only you really know your situation and you can determine what is valuable information to have.
People Saying It Could Be Worse: Yes, it is possible to construct a scenario that is more difficult than whatever you are living. However that make not make you feel better. Again, if you wish, give thanks for the input and keep going.
People Saying They “Don’t Know How You Do It:” Often this is said as a way to emphasize how “strong” you are, but they are right: they don’t know how you do it all because it can be very overwhelming. Response can be a polite smile if you feel up to it.
People Wanting You to Be Happy All the Time: This is simply not possible. Choose carefully the people you share your more intimate, difficult feelings with—there are those that will simply listen, care for you, and not have unreasonable expectations.
People That Make the Situation About Them: They sometimes overreact and you end up helping them manage their emotions instead of sharing your own information or they immediately start talking about some difficult situation in their life. They are often trying to empathize. Do the best you can to keep the interaction short and decide how and if you want to interact with them going forward.
• People Insisting on Getting Information and/or Visiting: This is surprisingly common. One tactic is to have a script in mind, “Joe is doing fine, thanks for your concern” and then a change of subject. Another is to have in mind the information you want to share, share it, and then stop talking. As far as people visiting, if you want them to, great. If not suggest a text or email, call or note—whatever works best for you at that time. Just remember, that you are under no obligation to have visitors or share information.
Joyful Moments in Communications
The Unexpected Kindnesses Of Others: This is surprisingly common and often overlooked. People you hardly know may step up to help under certain circumstances.
The Moments of Shared Understanding: These can be between you and your inner circle, between you and the medical staff, sometimes between you and a stranger. Often they are around some small matter, but they are heartening.
The Offers Of Help You Did Not Know You Needed: This is a learning process for everyone. Your inner circle and the members of your community you have shared information may provide insights that are valuable. For example: Someone will suggest that disposable cutlery is just the thing for infection control; another will arrange to have meals delivered, and another will offer to watch your children regularly. These moments of support can help you feel less on your own during this time.
The moments you will discover: Everyone’s experience is different so you will find joyful moments that are unique to you.