I wanted to write this post because I think there is a lot of confusion and judgement regarding social media and invisible illnesses.
I’m a member of many groups on Facebook which were set up for people suffering from illnesses such as fibromyalgia and ehlers-danlos syndrome. These groups are a place to vent, ask questions and give/receive support from fellow sufferers who understand your situation. On more than one occasion, the people in those groups have saved my life. They gave me the strength to carry on when I wanted to give up. The support I received was overwhelming and I’m forever thankful to those people who helped me through some tough times. I’ve even made some friends from them groups. We may live on opposite sides of the world but we are always there for each other.
What’s on my personal wall is a different story. The people who see my posts, more than likely don’t fully understand my illnesses. To be truthful, I probably rarely even see most of my “friends” from Facebook in real life. I think that’s the same with most people. I am friends with people on Facebook that I worked with or went to school with a long time ago. That’s why I love Facebook; we can reconnect with people from a long time ago or who live far away.
However, for people with invisible illnesses, social media can be difficult. One day we may post pictures of a day out with our families. A couple of days later we might post a status about high levels of pain or fatigue. No matter what we post, we will likely face judgement at one time or another from someone who says “you can’t be that sick because you went out the other day!” Social media does not give a full or true representation of our lives. There could be hours, days or weeks where we post nothing to our Facebook, Instagram, Twitter or Snapchat. Unless you ARE me, you couldn’t possibly understand how my illness affects me.
Personally, I prefer to keep my posts positive and most of the time have nothing to do with my illnesses. This doesn’t mean that I’m not sick, I’m just choosing to keep that part of my life to myself. I don’t need to prove I’m sick. I have stacks of medical records and scans that do that for me. Many people know that I have illnesses but if I constantly posted about all the bad days or which symptoms I’m currently dealing with, I would be called ‘negative’ and would probably be judged even more if someone saw me on a good day after reading all those bad things.
Obviously, everyone has their own ways of dealing with things and may decide it’s best to post about their illnesses for whatever reason. Each to their own. Social media is a platform for you to be anyone to want to be. It’s a blessing but it can also be a curse. For me, being positive and a fun person is how I get to feel like my old self before illness took over.
Basically, unless you were with someone constantly, you will never know their true lives. Please don’t think you know someone based on what you see online. Social media is a persons book cover. Don’t judge it before you know what’s truly inside.