Monday, January 9, 2012

The Power of Facebook

I have read a lot of articles lately about the hazards of Facebook. These articles have talked about how teens, and also adults, can bully each other through the use of this social media giant. The articles also mentioned how many people get so consumed by checking status updates, notifications, and playing games on Facebook that the other aspects of their lives suffer. Facebook has also been blamed for less face to face interactions between people which results in social isolation. I don't disagree with any of these claims as I have witnessed all of these pitfalls of Facebook. But I would like to present another view about Facebook that many people I know never get to experience.

When you have a chronic illness, social medias like Facebook can be your saving grace. Since I started battling Sjogren's Syndrome, Facebook has been an enormous wealth of information and support for me. To start with, there are a vast amount of pages and groups that discuss various topics, which is helpful when you are trying to access information about such a poorly understood illness like Sjogren's Syndrome. These pages and groups provide a diverse selection of information regarding subjects such as nutrition, alternative health, wellness, exercise, and positive inspiration.

One of the most significant of these Facebook pages and groups is one I follow on a daily basis called the Sjogren's Syndrome Foundation page. It is a place where patients, and others, can discuss different ways to manage symptoms and what treatments they find useful or not useful. It is a place where we can vent our frustrations to people who truly understand what we are going through. I have had the opportunity to receive some very good advice and tips from this page as well as the opportunity to help others; something that is so critical when you are out of work as a nurse and miss having the capability to give back to other people on a daily basis.

I have also had the chance to get and know some of the wonderful people on the Sjogren's Syndrome Facebook page on a more personal basis through e-mails and online conversations. They have become a valuable part of my journey through this illness. Because of them, I have learned about the power of sharing my story and of hearing other people's stories.

One of the stories that I have been blessed to start hearing lately is in part due to Facebook. A while back I sent a friend request to someone in my church. This person spent some time reading my blog, which I post on Facebook regularly. She realized that I had Sjogren's Syndrome. She also has a friend, who lives in our small town, that has Sjogren's as well. This friend and I have now had the opportunity to connect through e-mail messages. According to statistics, Sjogren's is not that uncommon as it affects four million people in this country. However the reality is that it is an illness that most people have never heard of and is very poorly understood, even amongst the medical community. Therefore it would seem amazing that two of us have found each other in this relatively small town. It is quite a blessing as well.

Another aspect of Facebook that I have found invaluable is the easy access it has given me to my friends and family, as well as to the world in general. It is very easy to become isolated when you are living by yourself, which I did for almost two years before moving in with my fiancee; or when are suddenly out of work. You never realize how much your work life provides you with social interaction until you find yourself jobless. Between managing my health, my home, and other day to day needs, I never find myself bored, but it can be challenging to keep connected with the world from your home when most of the rest of the world is at work.

Also during the course of my illness, I have had difficulties with my voice and breathing which has made communication on the phone not a viable option at times. Issues with mobility, pain, and fatigue oftentimes makes leaving the house impossible. Facebook provides me the opportunity to be a part of our daily world when my body does not want to. For me, Facebook has not caused social isolation as is so frequently stated in these articles I have mentioned; it has freed me from it.

So despite the fact that Facebook often drives me bonkers with all of its constant updates and changes, not to mention the ongoing privacy issues, I say "thank you" to Mark Zuckerberg for his ingenuity in the creation of this social media giant. Thank you for giving me, and so many others, the opportunity to support each other and enable us to be more informed and educated patients.

Photo: Courtesy of Google Images       


  1. Very well express Christine and I too use the facebook social media for my Sjogrens, Fibromyalgis and Lupus for info from other victims of these diseases. I know affects all in a different but similar way in a way we can relate with each other. Thank you for the boost for facebook. Thank you Harriet.

  2. I agree. There are definitely pitfalls to Facebook but overall, my experience has been very positive.

  3. I would have to agree and we would love for you to check out as well. TD supports a similar experience but with privacy and anonymity as key differentiators and the opportunity to share through shared diaries. I have found that in living with illness, it is nice to have a reference tool and too often the info on FB is transient and I can't find the details of what was posted several minutes ago. It is nice to connect with those on a similar journey - thanks for sharing!

  4. You made so many good points and I agree with you about both the negative and positive aspects of Facebook. One negative aspect about online conversations in general is that sometimes it's difficult to know the person's tone of voice and how they really feel about the topic. I've seen a few attempts at humor go very wrong on FB too! Well, everything in moderation I suppose. So glad that you are finding support on-line! Wishing you well... :)

  5. Thank you all for your comments. It can be difficult to ascertain a person's tone online and the use of sarcasm can definitely go awry.Just a matter of using good judgement!

    Thank you Anonymous for sharing the information about the Treatment Diaries!

  6. Christine, I can really relate to this post. I am too tired lately to visit all of my friends, to see their gorgeous children, to even just keep up through phone conversations. Facebook keeps me connected so that I don't feel isolated. I can send messages of support, love, and encouragement, even though I can't always be there in person. I've also connected with so many wonderful people who understand my experience with AI disease in a way that not everyone can.

  7. I agree with you on all counts but especially the part about being able to connect with other people that have autoimmune disease in a way that everyone can. Thank you for commenting!

  8. wow, this is a really interesting perspective! I don't use Facebook but I do love the community found through blogs (and recently twitter) so I imagine this is similar!

    1. I feel the same way about the blogging community as well! :-)