Warning: Patient Blogging Can Lead to Isolation

There are many wonderful websites out there specifically made for patient blogging. Sites such as CaringBridge and Care Pages are particularly popular in the Childhood Cancer community. When Colleen was sick, we maintained a CaringBridge site for her and it was fabulous. Before we discovered CaringBridge, it had became exhausting to repeatedly report all of the updates to everyone that was worried about her.

At the end of an eighteen-hour day of testing, Colleen’s CaringBridge site became a therapeutic way for me to not only update the world but also an effective way for me to journal as well as process what had happened. Many days were like a whirlwind with things happening way too fast. It was very much like a horrible amusement park ride on turbo boost and we were not allowed to get off no matter how sick we felt or how miserable it made us feel. Evenings, sitting in the dark hospital room, while Colleen slept, became my time to write, think, reflect, process, pray and prepare for the next day when I knew that I would be forced to get back on the horrible ride once more.

Five or six months into Colleen’s journey, she had followers from all over the world. I think we even discovered that there were people on every single continent that were subscribed to her journal updates. However, I vividly remember feeling very isolated and lonely. My cousin was visiting with us from New Jersey and we were sitting at the kitchen table chatting. She was commenting about how she didn’t call because she did not want to disturb us and she was keeping up with Colleen’s journey through her CaringBridge site. I thanked her for her consideration and dedication to reading the blogs. But then I pointed out that she had been in our house for several days and the phone never rang and nobody ever came to the door. It was during that discussion that I realized the root of my isolation. The world knew everything that was going on with Colleen because I was writing to them every night through my blogs. Some people were leaving messages in the Guestbook but it was not exactly the dialog that I longed for.  It was feast or famine. Couldn’t I have a comfortable meal?

If you are going through a difficult time right now and you are feeling isolated, I challenge you to let people know. Either let people know in your next blog post or send a special email just to a group of your closest friends. That is what I did. 

If you have someone in your life that is going through a difficult time, give him or her the space they need. However, please remember that you are hearing (reading) their story but they are not hearing anyone elses. Perhaps they would love to hear about what is going on in your life, they would most likely love the distraction form their life filled with cancer. Why not pick up the phone once in a while and ask them if they would like to share a pot of coffee or a bottle of wine with you? I longed to hear about what was going on in other people’s lives but I know that many of my friends felt guilty talking about their lives to me. They felt that what was going on in their lives was insignificant compared to what I was dealing with. I challenge you to consider that as long as you remain considerate, insignificant and boring discussions can be a welcome change for someone who is having to deal with a horrific turbo boost park ride all the time.

~ Until next time, Diane