Social media can help caregivers find community and support

Author Lea Zikmund offers valuable insight into the benefits of virtual connection

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by Carlos Briceño |

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Because my wife, Jill, has Huntington’s disease (HD), my roles include being her caregiver. With National Caregivers Day coming up on Feb. 17, I thought it would be fitting to share some advice from fellow caregiver and author Lea Zikmund, who published a book last year called “For Crying Out Loud: Connecting Through Grief and Loss in a Digital Era.”

Jill, our daughter, Alexus, and I got to know Lea when we participated in an HD-related audio project she facilitated. In her book, she writes about taking care of her father during his illness, which necessitated a liver transplant, with a special focus on finding community through social media.

I’m on social media and have chronicled some of my wife’s journey on YouTube, Twitter, and Facebook, but I’m not as active online as Lea is. I interviewed her over the phone recently to get her thoughts on ways social media can help caregivers. Excerpts of our conversation follow.

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CB: Why should caregivers post on social media?

LZ: I don’t think that there’s a “should”; there’s just what you need. How it helped me was not feeling alone. I really enjoy using social media in general, and tend to spend a lot of time on it. But it was feeling like there was a huge disconnect between the reality of what was going on in my life versus what I was sharing. And that just starts to feel really wrong at a certain point. And I didn’t like it.

What [social media] did for me was allow space for conversations with people that I probably wouldn’t have had otherwise. There’s a specific memory of me sharing updates on Instagram while my dad was getting his liver transplant, and my sister was sharing updates on Facebook. To be honest, part of it was just having something to look through at the end of an exhausting day and just [knowing] that people were thinking about us, because when you’re in that period of life, you forget to eat. You forget to check in with people, and all of these things. It was [a way to show that we] love and honor our experience enough to put it out there and ask to be connected to people.

You emphasize that we should use social media as a way to be more authentic, to show up more as ourselves, and to promote more human interactions. Why is this important for caregivers?

Caregivers notoriously take on way more than they admit to other people. It can feel so isolating. I was very lucky to have my sister throughout the process, who was having a very similar experience as [I was]. We were able to talk and debrief.

As close as we are, I still needed other outlets, and she still needed other outlets to talk about the experience. There’s so many feelings that come up with caregiving that you don’t know you’re going to feel until you have it — like anticipating the loss of a loved one, anticipating feeling angry, feeling resentful, feeling scared, feeling guilty, like you aren’t doing enough. All of these feelings are really hard to hold.

A lot of times with caregivers, you’re put in this role where you’re trying to be heroic and just trying to be perfect and hold everything up all the time. And I think that’s kind of a recipe for failure. It’s great to be able to help people in that way. But you can’t pour from an empty cup, so being able to share on social media, or share anywhere, like in a support group or in a small group of friends, reminds people that, “Hey, I need help. Or I will need help. Or I’m choosing not to do this alone.” Because I don’t think people should do things alone.

What social media tips can you share for caregivers?

Following hashtags that are related to whatever experience you’re going through is really helpful. I didn’t necessarily know a ton of people who were going through the same experience as me. I started following the hashtags #grief and #caregiver and would engage with the content so I could see more of it. That really helped a lot.

Another tip was figuring out your comfort level with sharing about your process. At first, I had a close friends list on Instagram that I would share certain life updates with. It was a fixed amount of people that I had control over, and I would share and just be like, “Hey, I need support.” I didn’t want to share that to however many people follow me on social media, but I did want to share it. So just figuring out your own boundaries with it.

Do you use social media on your caregiving journey? You’re invited to share your experiences in the comments below.

Note: Huntington’s Disease News 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 Huntington’s Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Huntington’s disease.


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