Sick But Social: Or Maybe Not That Social?

By Stacey Philpot

You own yoga pants in seventeen various colors and styles. You save makeup for special occasions and doctor appointments. Occasionally, you remember to put on a bra. You respond to invitations to hang out by asking, “Sure, do you want to come over here? ” But, other than doctors, nurses and pharmacists you haven’t actually seen another person in more days than you can count.

Thanks to rare disease and chronic illness, many days you just aren’t that social. If it weren’t for the World Wide Web, the isolation might be crushing. But within these virtual walls you find judgment-free, pants-free, support and encouragement day after day. Here you’ve forged friendships that stretch across the sea, made friends who never tire of hearing about your symptoms and support you on the worst of days. But is it real?

I met Robin online last spring in a private Facebook group. Robin is a warrior. Despite battling multiple life threatening conditions, she ‘s a burst of sunshine and encouragement. She’s a single Mom who travels five hours one way for bi-weekly treatments. Basically, she’s handling life like a boss. We’ve been trying to coordinate our treatment days for a while now. Sit down for coffee, eye to eye, heart to heart and share our stories. And yesterday, we sat in the cancer center parking lot where I’d just finished my IVIG and talked like we’ve been friends forever.

So is online community, real community? Here are 3 reasons why I believe it can be:

• Screens make us brave. There are simply some things easier said behind a screen. Maybe sharing about how our illness has affected us is one of them. Vulnerability is somehow less terrifying, less naked behind a screen. It enables us to skip the pretending we’re all okay and get down to the business of exposing our wounds.
• There’s something powerful about being surrounded by people battling the same things you are. I live in a small town. I don’t know another single person here with CVID. It can be isolating. But I can step into a virtual room and instantly be connected with thousands of other zebras. Commonality has a way of binding us together.
• If you live with rare disease and chronic illness, then you know understanding can be a rare and precious commodity. There’s something especially powerful and bonding about feeling understood. The rare disease warrior often finds this to a much greater degree within their online community than their “real life” community.

Is online community real community? Robin and I say yes. And if today, you’re feeling sick but not that social, that’s okay. Jump online and find the support, encouragement and community you need.

About Stacey

Stacey is an author, goofball and avid reader. You can find her blog at chronicallywhole.com where she endeavors to encourage other warriors like herself along in their journey of battling for health and discovering wholeness. She is mom to Hayden and Avery, stepmom to Julie and wife to Ryan (a smarty pants who works at NASA and logs their whole life on spreadsheets and pie charts, true story!) She has a strange affinity for eating whole meals in bed (don’t tell anyone) and is convinced smelling old books will make her smarter.