Last week, I wrote about the social media break that I took. There are parts of social media that are a little different for me because I blog, which is not done in a vacuum. Blogging, at least these days, requires the use of social media to promote and interact. However, when I was reflecting on my use of social media, I thought about the implications of it for the chronically ill.
This post is about how social media and the internet can be used for people who are chronically ill or homebound. Until I had a family member take me to a national conference, I never met another person with my relatively rare neurological condition, yet I can connect with them on the internet to ask questions about managing symptoms or coping any time that I want. Doctors shuffle me in and out of a 15 minute appointment and then outsource me to “specialists” for other symptoms, but these specialists don’t know squat about dystonia. I’m the one who has to educate them on my limitations and pain.
Basically, the internet, specifically social media, because most people with chronic illnesses don’t have blogs.
- There are people who live tweet their medication usage to bring awareness to their conditions.
- There are people who write insightful posts about what it’s like to be harassed for using their handicapped placard, even though they don’t have a wheelchair. Actually, the list of how blogs can be used to raise awareness is astounding.
- Facebook/Twitter campaigns can be used to raise funds and awareness.
- There are people who join private Facebook groups to find support, understanding, and answers to their questions.
- No matter if it is Twitter, the comment section of a blog, Instagram, Facebook, email, or something else that I’m leaving out, there are ways to connect with other patients.
However, there are downsides to using social media when you are chronically ill. There are downsides, like when you are housebound and you are getting on Facebook to check on your support group, but see pictures of your peers living the life you thought you would have. That’s why I wrote this post. There are some solutions!
- When someone is isolated, it can feel like the only way to stay connected to the world is through social media.
- I will admit, being tethered to phones, tablets, and laptops is exhausting.
- Social media friends are great, yet, they are not substitutes for real friends. The level of comfort you feel from behind the screen can keep you isolated, if you mentally struggle with getting out and making friends.
- Envy. It’s easy to see pictures everywhere of the fabulous lives of non-ill people. Envy can eat you up.
- Seeing peers living the life you thought you would have before chronic illness hit can hurt. Even if you’re normally fine, everyone has a bad day.
- Not everything requires an immediate response. Take time for yourself.
- Categorize/Organize your email for newsletters to read later, emails to respond to when you are well, and delete what is not relevant.
- We all can agree that people only post what they want people to see. They aren’t posting pictures of themselves crying and sad, just like you don’t either.
>>>However, if that is still hard to remember, it’s easy to create a Facebook page that you use only for joining private support groups and liking/following advocacy groups that inspire you.
>>>Also, there is a new app for your phone that allows you to JUST go to your Facebook groups. I you turn the notifications on or off.
- Clear out your blog feed. If looking at fabulous fashion blogs makes you long for the days that you used to wear high heels and blazers to your corporate job, and then go out for drinks (day to night outfits, anyone?) take them out of your feed. Only scroll through blogs that inspire you to live a more fulfilling life. If someone writes consistently depressing content, take that out, too. Just read blogs that make you feel good about yourself.
- Instagram: You can delete it. However, I love it. It’s one of my favorites! I have a personal account where I follow my real life friends (or I should say people that were my friends at one point in my life), but I don’t even log in anymore. I have a blog account where I only follow people who inspire me. I don’t follow fashion bloggers. I follow the bloggers that I read. I follow fellow chronically ill people who post funny pictures poking fun at themselves or who are raising awareness for their condition. I find that they are like-minded and inspiring.
- Twitter: If you scroll through your feed and someone is non-stop tweeting about their vacations or anything that you don’t like, you don’t have to follow them. You can also mute them, if you don’t want to unfollow for some reason.
Pro-Tip: Turn off notifications on your phone! No sounds. No pop ups. Move those icons to the back. You decide when and where you’ll check. You decided when and where you’ll respond. Being chronically ill can make you feel utterly powerless, but you can exercise a little control here! Take it!
Social media can be used to connect and interact with other patients. It can be used to learn and raise awareness. You have control over what you do and don’t see.
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