Giving Up Social Media Isn’t That Simple for Caregivers

Kristin Neva avatar

by Kristin Neva |

Share this article:

Share article via email
main graphic for

I gave up social media for Lent.

Many Christians deny themselves some pleasure or refrain from a vice or a bad habit for a period of preparation and reflection in the weeks leading up to Easter. It seemed like a good time for me to take a break from my screen.

I have mixed feelings about social media.

On the positive side, I adore pictures of new babies, and I love watching the children of my friends and relatives grow up from afar. I’ve found a community of other spouse-caregivers of people with ALS, and I even started a group for those of us with underage children.

However, I often feel a twinge of sadness when I see photos of other families on vacations or hikes. It reminds me of what we cannot do. That’s a negative aspect of social media, along with divisive U.S. politics and heartbreaking news of other problems in the world. Sometimes it’s just too much to deal with our own lives.

During the first couple of days of my Lenten fast, I realized how often I had the impulse to jump on my phone whenever I had a down moment. Social media eats up time that could be spent on other things. It felt good to break the addiction.

But I missed my online ALS community. I’ve become pretty isolated since my husband, Todd, has been paralyzed. And now I have even fewer in-person connections, between social distancing due to the pandemic and the difficulty of getting out in winter weather with Todd in a power wheelchair. Online connection isn’t the same as in-person friendship, but it’s something.

My social media fast lasted only five days before I caved and scrolled through my newsfeed.

I read a post by someone with ALS looking for solutions on how to use a phone with limited hand strength. After I shared our HeadMouse video, the person and a few others liked my reply. It cheered me to feel like I was being helpful.

I read a post by a caregiving spouse: “What not to say to a caregiver. Go.” Many of us shared stories of insensitive comments. People who haven’t lived with ALS don’t understand how hard it is, and yet some feel compelled to pass judgment. It’s good to know that we are not alone.

A fellow parent who lost his wife to ALS updated his friends on how their son is doing since his mom died. I am encouraged by posts from those on the other side when I find out the kids are doing OK.

I don’t need Lent to remind me to contemplate suffering. I’m reminded of it every day caring for my husband.

During this Lenten season, rather than giving up social media, I’m going to reflect on the compassion that is unleashed in the ALS community as people connect in suffering.


Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ALS.


Lillian lewis avatar

Lillian lewis

I noted that Kristin's bio revealed they built an "accessible" home in the U.P. Did she buy a set of plans? What would that "accessible" mean. Thank you for your help
Lillian Lewis

Kristin Neva avatar

Kristin Neva

My husband Todd and I researched, brainstormed and then he made initial plans using consumer-grade software. We gave those to our builder who drafted the final plans. Some of the main things to include are: having either a lift or ramp into the home or being on-grade so it isn't necessary; single-story living or at least one bedroom on the ground floor; wide enough doorways; space for a wheelchair to turn into rooms and turn around; and a bathroom with a roll-in shower and space for the wheelchair/lift. We made a video about our bathroom:

Leave a comment

Fill in the required fields to post. Your email address will not be published.