Why I don’t unplug (and don’t feel guilty about it)

Posted Thursday September 19, 2013 by Melissa

UnplugAs with any unhealthy trend, there is often a backlash, merited or otherwise.

Smoking? Anti-smoking campaign.

Obesity? Get healthy campaign.

Alcoholism? Sin tax.

Digital addiction? Soft and gentle suggestions to unplug. How to unplug. How to unplug your friends. Why you should unplug. Who unplugs. How long to unplug. How to participate in the National Day of Unplugging.

Subtle suggestions that you are:

Not experiencing the beauty and fullness of life.

Ignoring your children.







Wow. As if we needed any additional guilt in our pile.

A recent video with over 23 million views has made the rounds attempting to show us how wonderful it is to be unplugged and how rude, disconnected, and harried being plugged in is.

PhotosAs a mother to a child with a rare condition, in a clinical trial, with special learning needs, with many doctors and therapists, with my own health issues and appointments, with two other children who may not get enough attention and also feel the unpleasant effects of all this as well…. There’s entirely enough guilt to go around without adding the guilt of being plugged in. I think many rare disease parents (and patients!) would agree.

However, with all the hype surrounding unplugging, and with that twinge of guilt for the stolen moments, however small, of digital me time (how dare I!), I allowed the guilt to settle on my shoulders for a bit. I breathed it in. And then I almost drank the Kool-Aid.

BillsBut then I realized….

I am not going to unplug.

And I am not going to feel guilty about it.

We bear more than enough guilt for all the times we don’t know if we’re making the right medical decision for our child. And so what must we do? Plug in to our social media community, who knows vastly more about the ins and outs of the disease and its symptoms than any doctor. Or guilt for the impact the disease has on our family. So we plug in to the community who shares that burden. Or heartache for that mom who’s either just lost her son or is losing him day by day. So we plug in to pour in to one anothers’ lives. Plugging in is anything other than checking out.

If you see a mom reading a book, do you automatically assume she’s addicted to reading and ignoring her children?

If you see a mom paying her bills, checking the dates of her children’s doctor appointments, looking outside to assess the weather, reading her Bible, making a list of household chores, checking a map for directions, pulling out a photo album, calling to check on a friend’s sick child, calling in prescriptions…. BookAre they addicted to bills, photos, prescriptions, chores, the weather, the Bible, caring for others, or the like? Do they need to just let them all go and live the island life?

Just because all of those things are now performed on one electronic device, does that make any difference?

I don’t play games on my phone (but I do play phone tag with doctors, pharmacists, and insurance and supply companies).

MedsI don’t text my girlfriends for fun (but I do text my husband for fun).

I don’t spend excessive time on Facebook or Twitter (a great portion of which is rare disease related in any event) (but I do jump in and out for a moment or two).

I do play with my children. In fact, I savor them, each and every day.

I bask in the sunshine, the movement of the clouds, the wind on my face, and the birds singing in my ears.

BibleI have real conversations. With real people. In real life. Many of whom I met online.

I took a vacation. Didn’t unplug, but felt infinitely refreshed.

I’ve left my phone. Then wished I’d had it to take a picture of my kids doing something quirky and fun.

It is about balance.

I love my life.

MapI like my phone.

My technology is immensely useful in the life that I lead, the challenges I face, and the calling to which I am committed.

Don’t knock it until you’ve lived it.

And I don’t unplug.

There. I’ve said it.


P.S. I will be speaking at the Global Genes Rare Patient Advocacy Summit tomorrow on Rare Disease, Patient Advocacy, & Social Media. It will be webcasted live if you are unable to attend and want to learn more about using social media in your advocacy efforts.


Bonus Nugget of Knowledge: An article entitled ‘Plug In Better – A Manifesto’ discusses how to remain plugged in without entering addiction. I love the final quote: “Or we can consider a more encouraging possibility: we plug back in because we like it. We plug back in because this new online world offers extraordinary opportunities for creation, discovery, and connection. We plug back in because we don’t actually want to escape the online world: We want to help create it.”

Do you unplug? Why or why not?

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3 Responses to “Why I don’t unplug (and don’t feel guilty about it)”

  1. marianne vennitti // September 19, 2013 at 3:41 pm

    Well said Melissa. It is rare that I unplug for all the same reasons. When you have worked to find rare disease patients around the world with the same disease you are living with, create a community for them to share experiences and knowledge, work on networking to find doctors and researchers that may be a post away, follow the latest research for your community, support numerous patients networks for your diseases it is tough to unplug. I tell myself all the time that it’s too much, take a break, someone else will do it. Just when I’ve convinced myself it’s time to unplug I get an urgent message that someone needs help. The thought of myself in despair feeling so alone and scared, when I was first diagnosed, is still fresh in my mind when SM for Rare Diseases wasn’t what it is today. Letting that one person sit through another night without answers and support is much to much for me to let go of. So many nights, I see the light on my phone flicker as I begin to fall asleep and know that it must be someone who needs their hand held. Can I go to sleep knowing someone is living my nightmare? I don’t think so. No I didn’t ask for this job, this vocation but it was placed before me and I said yes. God prepares us for the journey ahead of us and I am prepared to do what I must for those he has entrusted in my circle of life. So just for today, I’m plugged in.

  2. Yes! Well said, Melissa. As a Multiple Sclerosis patient, MS advocate/consultant/blogger, social media has brought me friends, info, support, a place to build my research and advocacy skills, professional networking, and opportunities to build a new career in health advocacy. I couldn’t have done all that without getting plugged in, and can’t maintain it without staying plugged in. I’m disabled and retired, the internet is where it all happens for me. You won’t hear me knocking it, either.

  3. As an individual with MPS1 I find that my only contact with the world is through the Internet. My world would be a lonely place if I were unable to have some semblance of human contact besides caregivers and doctors. I am also trying to find my way of making a living online as a writer/blogger and so it is pertinent to build relationships through online communities, to unplug would be counterproductive. I have always understood the “unplug” campaign was created for people who willingly choose to use the Internet as a means of replacing the real-life relationships they already have, as if the real world was not good enough. I don’t think anyone in their right mind would ever denigrate a rare disease parent or patient for using the Internet for the resource that it is.