Social Media and Chronic Illness

When it comes to chronic illness, social media can be a blessing and a curse. Especially if your condition prevents you from getting out of the house, social media can be a great way to keep in touch with friends and family. It can also be a great way to connect with online support groups.

social media

Photo credit: Jason Howie

Being a member of an online support group comes with many benefits. First, you can make friends with people who are struggling with the same conditions and symptoms. Having a friend that truly understands what you are going through is invaluable. In addition to meeting people who you connect with on a personal level, the online support group can give you a feeling of belonging, provide you with knowledge and educational resources about your condition, and give you a place to seek comfort, let off steam or assuage your fears.

However, as with most things, there can be negatives to participating in social media when you are struggling with a chronic illness:

1. Fear of missing out (aka FOMO)

When your illness limits your ability to participate in social activities, Facebook, Twitter and Instagram can be death traps of self-pity, frustration and jealousy. From seeing pictures of your friends enjoying a night out to posts about weddings, babies, new jobs and new homes, social media can quickly make you feel like your life isn’t measuring up.

2. Becoming overwhelmed by your support group

Online support groups can also be a double-edged sword. When you get hundreds or even thousands of people together who are suffering, you are going to get a lot of stories and rants about hospital visits, scary symptoms and everyday struggles. While this can be very therapeutic, sometimes this can become overwhelming and cause you to focus on and magnify your own sufferings, which can contribute to feelings of depression and anxiety.

3. Opening yourself up to criticism

Often, people will share their journey with chronic illness on social media to spread awareness or keep close family and friends updated on their condition. Unfortunately, some social media users lack tact and compassion and will find a way to criticize, drag you down and cast doubts and negativity your way. Some days you may feel strong enough to shake it off, but if you are having a particularly hard time, it can feel like you are being kicked when you are down.

So, what should you do to combat the dark side?

1. Remember that social media is a sanitized representation of people’s lives.

Keep in mind that people usually try to represent their best selves on social media, so you need to view every post with a grain of salt. Also, remember, on Facebook, you can unfollow a person’s posts without unfriending him or her, or you can create lists on Twitter so that you are only seeing posts by certain people.

2. Find balance in your social media use.

If you find yourself feeling jealous, frustrated or overwhelmed when you’re scrolling through your news feed or reading posts in an online support group, take a break. It is important to find the right balance for your social media use. Take a technology vacation if you need to or limit the amount of you time you spend on social media sites. Of course, if you really struggle with social media and don’t find it provides you with any benefit at all, you may want to unplug altogether.

3. Make use of privacy settings.

Familiarize yourself with the various privacy settings available on each social media site. This can help you protect your posts so that they are only visible by your inner circle of supporters. You might even want to consider creating a secret group or separate social media handle just for updates and posts related to your illness. Also, remember: When you are being attacked online, it is like any other bullying situation; it is about the bully, not about you.

How does social media help you through your chronic illness journey? What do you do to combat the social media blues? Share in the comments below.


2 thoughts on “Social Media and Chronic Illness

  1. Very true post. I often take a vacation from social media just for my own mental well being. People, even those who are supposed to love and support you, are often cruel and plain out rude about the life of someone who lives with chronic illnesses. They either don’t fully understand or they seem to get tired of hearing it I guess.

    I used to be a very active blogger, before my Lupus got so bad and other illnesses showed up. Once it all got worse, I found out who my real friends and family were very quickly, needless to say, and I finally just stopped blogging simply because I had enough on my plate with my illness and day to day life. I didn’t need the added stress of others bashing me on whatever I needed to get off my chest that day.

    In therapy, this topic came up and I realized that I really missed being able to vent and just let everything out, good or bad, so I was asked to start blogging again and was told to keep it away from anyone I know in real life or previous “friends” I’ve met online before. So, here I am. It’s been a slow go for me, getting back into the habit of it all, but I hope to find a small group of people who wish to love and support one another unconditionally, without judgement and lack of compassion.

    You are the first person (after days of reading blogs to find like minded people who also seem to either suffer or understand chronic illness) I have Followed and I look forward to getting to know you and reading more from you.

    Have a great weekend, hopefully pain and sickness free. Or at least tolerable.

    Snoogles, ChronicArtisticSpoonie


    • Thanks so much for sharing your story! I agree; sometimes you just need a social-media vacation. It can be very challenging to express your experience to friends and family. And, unfortunately, sometimes people struggle with being supportive, understanding and compassionate.

      I am really glad you are taking up blogging again! It’s a brave thing to do, and you should be proud of yourself for taking that step again. I am honored that you have chosen to read and follow my blog. I too look forward to reading your blog and supporting each other through this often rocky journey.

      I hope you have pain-free weekend as well, but yes, “tolerable” is still pretty good too. 🙂

      Liked by 1 person

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