Friday, July 10, 2009

You are NOT ALONE: How Social Media Helps Me Cope with Chronic Illness

Invisible Chronic Illness is one of the most isolating experiences anyone can go through. After having suffered from depression and anxiety most of my life before I got Fibromyalgia and Chronic Fatigue Syndrome (M.E.), I know a lot about social isolation. After having so much therapy and graduating university with a B.A. in psychology, I think I may justifiably call myself an expert on social isolation.

Everything you read about illness - whether it be physical or emotional - emphasizes the importance of having a good support system. And yet those of us who are sick are the least capable of developing and maintaining a lot of caring friends and family. The ones who stick by us do so out of their own love and heroism, not because we've been able to "maintain" a good relationship with them. My very best friend, my oldest friend, my dearest friend, is the most selfless and patient person I could ever hope to meet, and I consider myself lucky that she's stuck with me all of these years, through my periods of silence, my lack of motivation to call, my self-absorbed sorrows and complaints, my cynicism. We are lucky if we have just one person like this in our lives, let alone enough to warrent the label "good support system".

Along comes Web 2.0, and suddenly there is a place for the millions of us who suffer chronic illness to speak, to connect, to share and support each other. Sometimes, it can be just as comforting to have a "cyber-hug" from an online friend who knows exactly what I am going through than from someone in my "real life" who cares but has no idea. The internet is blooming with chronic illness blogs, written by people just like me, who are finally allowed to be heard even though they can never leave their neighbourhoods, houses or even beds. And like me, they are desperate to find others who really understand.

For me, Twitter is the ultimate refuge. At any time of day or night (and I am up at all hours due to my screwed-up sleep patterns) I can reach out and instantly find support. I follow hundreds of people all over the world with chronic illness and other disabilities, and we are each other's safety nets when we're otherwise alone and helpless. Twitter has become, for all intents and purposes my "support system". It also provides a wealth of links to information and stories about chronic illnesses, spreading like a true web all over the internet. Blogs are linked to 15 other blogs are linked to articles and health sites are linked to support forums, are linked back to Twitter.

Different people use Twitter in different ways. For those who use it primarily for business (to advertise or gain connections with other businesses), and for those who've never tried or 'gotten into' using Twitter, it is hard to explain how much Twitter has improved my well-being. They automatically generate an image of me sitting alone at home shouting out into an uncaring box of other people's self-important shouts. They think I'm avoiding 'the real world' in favour of faceless people I will never meet. And indeed, if you don't choose carefully who you follow on Twitter, you might find yourself doing just that.

In my experience, however, Twitter is the friendliest, most caring place on earth. I may never 'meet' an online friend in real life, but I don't have to. On Twitter, I get to meet their hearts. On Twitter, we get to be our true selves and share our light and love without fear of recrimination or looking foolish. We get to say "I love you" without cringing while waiting to hear it back. We get to 'hug' people who might intimidate us in real life. On Twitter, I feel like I am dealing with the genuine side of people without having to wade through their personas and defenses. On Twitter, we are not afraid to be vulnerable. We are not afraid to cry out in need. And we are not afraid to follow our natural immediate impulse to respond to another's need.

The demographic of Twitter is different from most forms of social media. I recently read that the average age of a Twitter user is 45-59. Which means you have the opportunity to learn from a wealth of life experience, from people who are mature enough to have learned compassion, who care about more than themselves and their own small 'monkeysphere'. The people I follow on Twitter are Universally dedicated to lifting each other up, to creating good in the world. They are people interested in expanding their knowledge and hearts to include many more perspectives and people. The 'real world' limitations of geography and social customs do not create many opportunities like this for curious people. Twitter is one place you can literally feel the 'consciousness shift' the world is undergoing.

Social media allows you to instantly get involved in making the world a better place. Spreading information and awareness about neglected human rights issues instantly inagurates you into a community of caring others. Instantly your message gets sent out to hundreds of people, and such things can go viral in a matter of seconds. Twitter gives you the power to make a real difference, to touch other people's lives and be touched in return. I've found it to be a ceaseless fountain of hope and motivation. Further, the ability to actually communicate with people who are doing amazing things - authors, bloggers, artists, celebrity activists, teachers, spiritual leaders - can be profoundly inspiring. Under the right circumstances, Twitter showcases the very best of humanity.

There are other social networks out there - and the number grows daily on sites like I use Facebook to keep up to date on the activities of my family and friends, but Twitter abounds with the things in life that I love the most: authenticity, ideas, curiosity, inspiration, support, motion, creation. It is in the flowing stream that I find so much of what I need to keep me happy. Most of all, the people I follow on Twitter daily renew a faith in humanity that I've never had before. There are good people out there, caring people, heart-centred people. They care about me, and I care about them - this is not a delusion, a false presentation. The people I've chosen to follow and communicate with on Twitter are real people with a genuine desire to connect with, support, and inspire others. They do not have to be in the same room for me to recieve those gifts, nor for me to return them.

People suffering from chronic illness are often told to volunteer, to focus on someone or something outside themselves, who are perhaps in even worse circumstances. This can be extremely difficult if not impossible for those of us who have little mobility and/or energy to spend. Social media can get you out of your own head in an instant, and transport you into the lives and experiences of other people. We get a glimpse of what it is like to live in another part of the world, with different kinds of cultures and families. We get to answer calls for help and support, we get to share our talents.

Through social media, I have been able to use my natural abilities to help others, and always receive warm gratitude and/or admiration for doing so. This is not just the case for the WAMCARE organization that I volunteer at, but for every life I have touched by being kind and understanding and offering an ear or a shoulder when someone is suffering or even celebrating. I can have a positive effect on many lives without leaving my apartment. That gives me a great sense of meaning and purpose in my life, which is something I've been lacking since I got ill. I may not be 'productive' in my society's limited sense of the world (i.e. 'bringing home the bacon'), but I can support others in their own efforts, I can help other ill people feel a little better, I can spread information that may one day help millions of people. In doing so, I've also started to feel much better about myself. I get validation and help that I could never recieve if I walked every street in my city. My insides are who I am online, without the masks that separate people from each other in real life. I can be my friendly, generous self instead of the fearful protective shield I sometimes feel compelled to wear when I walk out into the 'big bad world'. Online, with my 'support network', is the safest, healthiest place that I've ever been.


I sometimes write things that I don't really mean or believe. These are not to be taken literally, nor as definitive statements about me or my beliefs. Thoughts and emotions are transient, and I reserve the right to change my mind, generalize, exaggerate, give strong opinions, or write other possibly offensive statements. I don't lie, but I may say something that's not true to check whether I believe it or not, or to make a point. Call it creative license. This is my blog, and do have the right to say what I want. I'm using it in creatively therapeutic ways. Whatever the reader may think of me and my words, please believe that my core intentions are always good and I never willingly hurt anyone.