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.

Pros

  • 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!

Cons

  • 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.

Solutions!

  • 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: , ,
I Increased My Twitter Followers by 30% In 45 Days

Ok, so I know I wrote a post about moderation in social media/what I learned from my social media break. I still believe that. I will be writing more about the topic of social media and the role it plays in my life, but as a blogger, I can’t get around the role that it plays in my blog. Twitter, especially.

HandCrafted

I was always a little scared of Twitter. I didn’t create one until almost a month after I created a blog. Recently, I decided that it was probably an under-utilized networking and promotion tool (for me!). So, I made a few changes, put in a little more time, and saw some fast results. This isn’t like a humblebrag. I’m sharing these tips because if I did it, you can do it, too.

At the time of publication, 12 days after writing, my following continued to grow, and I continued to engage with my audience.

 

If you are already a Twitter Professional, then this probably is old information for you. However, I would always see people who were doing great at Twitter, or so I thought, but I didn’t know how to get there. I also did math for you guys. I am not saying that this is sustainable – like I’ll grow by 30% every 1.5 months forever, but as time passes, the followers that I do have will probably become more engaged followers and a better community, so to speak, on Twitter.

Honestly, I don’t know how I started with 631 followers on January 14, 2015, when I signed up for CoSchedule. I probably relied heavily on past giveaways, which I sparingly participate in now. At the time of drafting this/doing the math – yes I had to Google basic Algebra to find percentage change! – I found that between January 14 and March 1, I increased my following by 29.95%, so 30%!

In a month in a half of engaging on Twitter:

  • I had 30% more followers
  • 9.3% of my sessions (per Google Analytics) came from Twitter.
    >>>The month and a half prior to starting to CoSchedule and changing a few habits that I’ll talk about below, I only got 3.12% of my sessions from Twitter.
  • Sometime in the last month and a half, I also added a custom bit.ly link for my blog to my Twitter page to track how many people were coming straight to my homepage after finding me on Twitter instead of just clicking a link to a post. I’ve had 50 hits, which I would guess were potentially 50 new readers. (You’ll see why this is important later!)

The Tools I Used:

If you want to help people help you, check out my post on adjusting your sharing settings!

What I Did:

  • I always schedule promotions for my own post through CoSchedule.
  • As I read through Bloglovin, I use CoSchedule and Buffer to share the posts that I like. I try to spread the love around. You can read my CoSchedule tutorial here to see how I share posts WITH pictures. The statistics vary, but Tweets with pictures get more clicks.
  • Hashtags! Put hashtags that fit the posts that you are sharing, so that they will be found by new people.
  • Retweet people: I use Buffer to fill it up with retweets. So, I don’t overwhelm someone’s feed, but I do get someone else out there. I don’t like to do “RT @soandso blah blah blah” because it usually doesn’t fit, plus it shows some else’s name and face out there.
  • I searched hashtags that were relevant to my blog, so that I could retweet the authors of the posts or find the posts/articles and use CoSchedule to share them with a photo. I mostly used Buffer to space them out at intervals.
  • Share posts, articles, pictures, jokes, or thoughts related to the content that you publish.
    >>> For instance, I write a lot about books, health, and blogging. Find out what hashtags (you can Google or search around Twitter) and see what hashtags get the most attention. While “dystonia” might be the most descriptive hashtag, #spoonies reaches a lot more people. Therefore, I use that. However, you can change the hashtags if you share something more than once.
    >>> The people who find articles through hashtags might not be reading my blog, but they start to follow me when they see that I’m sharing information that they’re interested in reading.
    >>> The custom bit.ly link lets me see that if people start following me, they are clicking my blog’s homepage. That lets me differentiate between who is clicking posts that I share of my own or who is newly checking me out.
  • Twitter Parties/Chats. I read this post about How to Win at Twitter Parties, which gave me the boost to try them out. I don’t always get new followers or anything, but I do make new connections!
  • Get on Twitter! I find using my phone a little bit hard, unless I’m just scrolling through and making a quick reply to someone. Otherwise, I wait until I’m on my laptop. Sometimes I get into some pretty funny conversations that introduce me to some new people.

Other Tips:

  • Use an app to track followers. I don’t use it to track unfollowers, but rather, sometimes I have lots of conversations with a person without realizing that I’m not following them back! I don’t automatically follow people back (because some variation of Mark Twain follows me every single week). But, it lets me make sure I’m following along with Twitter friends.

Exciting News!

Twitter chats hosted by your’s truly are coming your way!

Right now, I’m working on hosting a chat about co-morbid physical and emotional illnesses with a mental health advocate. Eventually, I will be hosting chats on all sorts of chronic illness topics in order to connect advocates who have blogs with patients. There is nothing to stop a patient with a Twitter account from being an advocate.

I write a lot about health topics, but the majority of comments come from people who aren’t sick, if I get comments. However, the posts are being read. Since I started using Twitter more, though, I’ve found that people who don’t blog are more likely to reach out to me on Twitter. It’s inspirational because I feel like giving up a lot.

[Tweet “Be clear: I don’t write for comments. I write to reach a specific set of people #spoonies”]

The reason that I like using Twitter a lot more now is that I’m finding blogs that I like, people who inspire me, and an unreached group of people: non-blogging chronically ill.

Anyway, I’m excited to use social media for good! I’ll let you know when the Twitter chats are starting. You can follow along and get news by following me on Twitter.

Also, what is your preferred time or day for a Twitter chat? I would like to hit as many time zones as possible!

Note: This post contains CoSchedule Referral links.

Please note that comments with links that are not relevant to the discussion will not be approved. Personal signatures with blog URLs will be deleted. Please use the Disqus profile to add your blog’s URL, so that I can find you.

Categories: blogging Tags: , , ,