Pros and Cons of Social Media for Chronically Ill
Pros and Cons of Social Media for Chronically Ill >>> Tips on Combating the Cons 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.
[Tweet "Being chronically ill can make you feel powerless, but you can exercise power over your media!"]  

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!

In Summary:

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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Categories: Chronic Illness | Tags: , , |
  • these are all great tips! i have my notifications turned off on my phone, like you suggested, so i get to decided when & how i check social media! it is so freeing!! 🙂

    • Yeah, I discussed those more last week:
      This is more for people who are homebound and want to take advantage of all of the support that the internet has to offer, but sometimes seeing peers on IG or FB or whatever can get you down. I mean, I know we all know that people only post what they want us to see, but it can still be hard to remember that.

      • right. i read the post and, as i can’t possibly imagine how hard it is for you or others who are home bound, i felt like i couldn’t really comment on that aspect of social media. so, i found aspects of your post i could connect with to comment on. for instance, your pro-tip about turning off notifications… i simply agreed that i could connect with that aspect of the post. your post alluded that it was freeing for you to be able to check it on your own terms… so i was saying i found it freeing as well. on another point, i was also answering the question you posed asking how people (chronically ill or not) handled social media. i notice that question is no longer at the end of your post, so i’m assuming you didn’t really want input from others. my apologies.

        • You’re right. I did ask. And turning off notifications is great. I suppose I meant it to encourage people who can’t control their bodies to control their media. I guess by the time I got to the bottom of the post and had had so many generic comments that made it seem like the wasn’t read, I was extremely frustrated.
          I went back and edited the post for clarity.

          To be honest, when I write about chronic illness, I usually don’t get a single comment. I know people read them, based on search engines, but I usually don’t hear anything back (and don’t expect to) on chronic illness posts.
          I know you always mean well, so I should not have assumed you were another mindless commenter. Very sorry.

          • no worries. i know it can be hard when it feels like people don’t understand what you meant to come across as saying. or when you pour your heart into a post & then no one comments. i know for me, sometimes i hesitate to comment on certain posts (not of yours… just in general) because i don’t want to come across as insensitive if i use the wrong words. because the truth is, i have no idea what you are going through. but i do enjoy hearing about things from your perspective because it helps to give a peek into your reality!

  • Great tips!!! I wish I was able to turn off my notifications on my phone but i’m such a social media whore I can’t. I use to have two twitters/instagram, personal and blogging but then i realized that was too much for me so now i just have blogging twitter and my instagram in one. No wonder why my phone is always dying. The good thing is that I have the “do not disturb” set up on my phone during the night. I love my sleep.

    • Yeah, that’s not what this post is about at all. The tips are for effectively using social media when you’re chronically ill. Last week, I wrote about the whole notifications and staying sane thing, but this is really about how to battle some of the cons of feeling left out of the life you thought that you would have, but don’t, when you log into social media. Like, I always thought that at 27, I would either be going through the FBI academy or having my first child, not averaging 200 doctors appointments a year. So, the post is about being able to reap the benefits of the internet and social media, specifically when you have a rare condition, without having to feel some of the pain of seeing your peers live the life you had/thought you would have.

  • Do you watch Catfish? There was a really interesting episode a few weeks ago on, where a woman with Lupus was catfishing someone – and her reasoning was so sad. She was stuck in the house all day and it was almost like her way out. Tied in really really well to this post.

    • Haven’t seen it, but I’m familiar with it. It’s sad. There are so many good support groups where she could find friendship and be herself.

  • Its a crazy world where social media has such an impact on our lives & we need to learn when to turn it off…. but its definitely something that needs to be handled for our own sanity & happiness.

    • Well that’s not what this post is about at all. Last week I wrote about social media in general:

      But this post is about how social media and the internet can be a lifeline for people who are chronically ill or homebound. Until I had a family member take me to a conference, I never met another person with my neurological condition, yet I can connect with them on the internet to ask questions about managing symptoms or coping any time that I want. Basically, the internet, specifically social media, because most people with chronic illnesses don’t have blogs, have allowed patients to help each other when our doctors shuffle us in and out of 15 minute appointments.

      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 is a new app that allows you to just check groups, you can create a FB account just for joining groups, only follow IG accounts that inspire you – like following other people with your condition.

      So, this post is not about turning it off. It’s about using it when you’re chronically ill.

      Thanks for (not) reading thoroughly.

  • I’m glad to hear that social media helps you to connect with others with the same condition. Whilst pregnancy is not an illness and I can in no way compare it to a pregnancy, I can appreciate what you’re saying about the net and social media being a good way o connect. The private Facebook groups are great to discuss with like others what you’re going through. I’m in a private pregnancy Facebook group where we probably over share info but it’s great to know that others are experiencing the same thing. Knowing you’re not alone is a great feeling of relief.

    And your tips about unfollowing negativity is great!

    • Pregnancy is probably prettttty scary and you don’t want to read some unanswered message board post from 2008, so it’s cool that they have groups for that!
      Yeah, I definitely had to just clear out my Bloglovin feed a few months ago (1. To make it more manageable and 2. get rid of people who only did “look at my wonderful life updates.”)

  • Turning off notifications is so helpful sometimes! I admit I fall in to the trap of thinking I have to respond to everything right away and it’s exhausting especially when you’re not feeling well!

    • Yes! I am always like “oh, notification. Must respond.” Now, I’m getting kind of slack… like 5-10 days for comment responses. I haven’t even tried engaging on Facebook much. I don’t know. I guess it’s about priorities right now.
      Like text messages are still a priority for me, but like Twitter (unless I’m on my laptop) and Facebook can totally wait. I like Instagram, but since I moved it to the back of my phone and turned off notifications, I really only check it once or twice a day, but I am more intentional about leaving comments and stuff!