Posting Your Cancer on Facebook … Life, Interrupted

well-suleika-facebook-tmagArticle-1In the world of social media, we are our own self-portraitists. Our digital identity is doctored to show the best version of our lives. (Maybe a more apt name for Facebook would have been “Best Face” book.) It’s not a new observation to point out the disparities between our online identities and our real selves, but for me, as a cancer patient, that gap has never felt larger.

If you had visited my Facebook profile last June, you would have found pictures of a smiling 22-year-old girl with long, wavy hair. She’s exploring the streets of Paris with a chubby King Charles spaniel named Chopin; eating tiramisù with her boyfriend Seamus at a cafe in the Marais district; having sunset picnics along the Seine with friends after work. This was a happy, successful, carefree person. On Facebook, aren’t we all?

What most of my Facebook friends couldn’t have known was that this young woman no longer existed. In the “real world,” I was in the oncology unit of a New York City hospital, undergoing my first round of intensive chemotherapy. My hair was falling out in clumps, and it had been weeks since I had eaten solid food or taken a walk outside. Even my name had been changed, inadvertently — my hospital door tag read “S. Jaquad” — with a “q” where the “o” should be.

When I learned I had an aggressive form of leukemia 12 months ago, a lot of things were running through my head, but updating my Facebook profile was not high on the list. After all, in the land of Facebook, I didn’t have cancer yet. Friends were still posting on my wall asking if they could visit me in Paris. Online, I was still a healthy recent college graduate, who was “in a relationship” and liked jazz and Ryan Gosling.

But every time I logged onto my Facebook account, my profile felt more like a stranger’s than my own. In the midst of a medical crisis, I found myself preoccupied by a social media question. To share or not to share? I wondered to what extent my digital life ought to reflect my real one.

As long as illness has been around, people have faced the challenge of communicating what it feels like to be sick. But social platforms like Facebook and Twitter make it easier to share than ever before. Even so, I found myself hesitating to answer the Facebook prompt that asks, “What’s on your mind?”

My first social media decision following my diagnosis was to cut and run. I deactivated my Facebook account. Looking at pictures of my healthy precancer self stirred uncomfortable emotions; it was a reminder of a life past, of all that had been taken from me.

I wanted to withdraw from the world until I got better. Then I would reactivate my account and move on with my life as though nothing had ever happened.

To share my cancer with my 1,500 Facebook “friends” felt way too public and maybe even trivializing. After all, cancer is not something you “like” on Facebook. But in an age where our social media presence is so inextricably linked to our identity — on and off the computer — not updating my profile to reflect my new reality felt inauthentic, even dishonest.

Five weeks into my first hospitalization, my doctors informed me that my disease hadn’t responded to the chemotherapy. Exhausted and depleted from the treatments, I couldn’t imagine starting the process over in a few weeks. It was the first time that it struck me that I might not get better for a long time, or at all. My cancer wasn’t seasonal, or something I could temporarily hide. Illness was going to be a part of my life. For now.

After the hospital, I went home to my parents’ house, to my childhood bedroom. I had completed an almost total retreat from the world. I found it hard to even pick up phone calls from my closest friends. What did I possibly have to report? My days were a dreadful routine of meals, medicine and the view of the ceiling from my bed.

But my self-imposed exile weighed on me. As hard as it was to relate to my peers — 20-somethings starting new jobs and new adventures — I missed my friends. And my disengagement had started to worry them. In this hyperconnected age, when we’re all keeping tabs on one another through our online avatars, not updating a status message can be its own kind of update.

I began to reconsider my Facebook silence. Slowly, I started to reveal bits and pieces of what I was going through. First, I posted a picture of myself wearing a pink scarf that covered my head. Next, a picture of me wearing a big blue hat, my long brown tresses clearly missing. And later, a picture of me nearly bald, with just a sprout of very fine baby hair. I had put myself out there. And there was no going back. I now officially had cancer, on Facebook.

For several months now, I’ve been posting updates — about chemotherapy, baldness, nausea and the like — mixed in with the normal stream of my friends’ party pictures, news updates and birthday messages. There’s a liberation in the type of public honesty you can engage in on social media. And in some ways, venturing back into social media has been better therapy than any prescription.

For the first time since I’ve been sick, I feel connected to a responsive community I hadn’t previously known existed. I like hearing from other cancer patients, and their caregivers, who share with me their own stories and wisdom. And for my friends, this has been an opportunity to witness and engage in an ongoing conversation about what it means to have cancer in your 20s.

So much has changed in my life since my cancer diagnosis. But now, when I go to my Facebook profile, I see myself again.

Suleika Jaouad (pronounced su-LAKE-uh ja-WAD) is a 23-year-old writer from Saratoga Springs, N.Y. Her column, “Life, Interrupted,” chronicling her experiences as a young adult with cancer, appears weekly on Well. Follow @suleikajaouad on Twitter.

June, 2012

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