Monday, June 21, 2010

Support through Technology

Does it have to be IRL to be meaningful?

For some people facing illness, one of the hardest things to deal with is the sense of isolation. Even in the most loving group of family and friends, if you have never lived with illness, it may be impossible to truly relate to the experience. One powerful remedy to this sense of being alone or not feeling truly understood is connecting to others living with the same or a similar illness.

Finding direct peer support and interaction can be a challenge. Here are just a few examples of why "in-person" support may not be a reasonable option:
  • Patients may be simply too sick to attend meetings or actively pursue friendships with those walking a similar path
  • Some diseases are so rare there are few patients to connect with and even fewer in a specific location
  • If an illness can be contagious, a peer to peer meeting is potentially dangerous
  • Family members may so overwhelmed with caregiving, they do not feel comfortable leaving the home for a support group or other peer support opportunities
For these reasons and others, online healthcare communities have become the cornerstone of support for some patient and families.

For some, the level of connection and caring that can happen in the online communities is difficult to understand. Patients or family members may be misunderstood or teased for the deep bonds they can develop with people "they have never met." While this is an understandable perspective, for those facing illness and in need of peer support, these relationships become just as important as the relationships they have IRL (In Real Life).

There are certainly dangers that accompany these online friendships. Sadly, there are people on the internet who pose as patients or caregivers for a variety of reasons. These people may just be desiring attention and caring. More sinister, some may be trying to scam innocent and compassionate people out of money. While these "patients" and "caregivers" are rare, it is important to be aware of this possibility. The lengths some people will go can be quite extraordinary--computer programs to mimic hospital sounds in the background for example--so be mindful of your heart and wallet.

That said, online chat rooms, listserves and other blogging/networking sites like Caring Bridge (caringbridge.org), can be a lifeline to those living in the illness maze. In addition to emotional support and understanding, the forums can be great resources for first person accounts of certain procedures, medications and treatment options. Patient and families will undoubtedly provide a different perspective regarding a healthcare option than a healthcare professional. A peer community may also be able to provide examples of treatments being done in other centers throughout the country or the world, therefore increasing your capacity to research your options outside those presented by your local care team.

Between the emotional support and the practical information, online communities can be an invaluable resource to those navigating the illness maze.

Googling Grief

A few months ago was the one year anniversary for the death of a beloved friend. Today I was thinking of her and missing her presence. On a whim, I decided to google her name. Being that she was a smart and active woman, there were lists of articles written about her and by her. Some had pictures and some had only her words. Through the tears in my eyes I felt the closeness I had been longing only a moment before. Here she was, in front of me, speaking through words of days past. It was as though we had been able to share a cup of coffee for just a little while. Somehow, with her image and language only a key stroke away, my grief was soothed.

I have been noticing other ways in which the power of the internet is gently influencing the grieving process. I am one of the millions of facebook addicts in this country and rely on it for way too much of my own socialization. For those who don't know, Facebook is an online networking site that makes it easy to keep in touch with hundreds of people at once, and yet somehow manage to create the feeling of closeness.

In the past year, I have had several facebook friends die. Because of the rules of facebook, the only person that can close down a facebook profile is the person themselves. This means when a person dies, the facebook page will remain. What I didn't expect was how people would continue to use that facebook page.

In all of the instances I have witnessed, people continue to write on the "wall" of the deceased person's profile. Sometimes they are sharing a funny memory the two had shared that made them smile that day. Some days they will express their deepest sadness and difficulties with getting through that day without the one they love. Other times, they will simply stop by and say "hi." In all of these postings, the grieving are speaking directly to the dead, without any sense of embarrassment or awkwardness. They are not talking about their loved one, they are talking to their loved one.

It is, in a way, the cyber version of a grave stone. A central place to go where a person's energy is stored and all who knew them are welcome to visit. It is a place to cry and share. It is a place to tell the ones we love we still care and they are not forgotten. It is, in my opnion, beautiful and unique. In a culture where we have so few ways to openly process our grief, there on facebook, we are loving those who left us behind.

I don't have profound words about the social implications of this new trend. I don't know really how it fits into our cultural grieving paradigm. All I know is that today I visited my friend on the Internet and it helped me feel close to her. When I go to the facebook profiles of those I love, I somehow feel like I am walking in the footprints they left behind. This, I think, is healing.

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