How many of you out there have had people accuse you of faking your illness based on things you post on social media? It really can be a lose/lose situation for those of us with disabilities. If you post yourself getting out and having fun, you’re not that sick and if you post yourself lying in bed in pain, you’re attention-seeking. If you do both? You’re not being consistent and therefore lying about your illness.
It seems people are under the impression to be truly disabled, you have to be miserable, housebound 24/7 and silent. Out of sight, out of mind.
Recently I had the displeasure of being accused of faking my illness by a family member. Why? Because the wide range of photos on Facebook show my life for what it is: inconsistent. Some days I am in my wheelchair and some days I socialize with friends without a mobility aid. Anybody with a chronic illness knows that you have your good days and your bad days. When you do have your good days, you take advantage of them.
I was told by said family member to get off the internet and “go for a long walk.” I’m sure some of you reading this are scoffing at the very idea. I was pleasantly surprised to see how many of my non-spoonie friends stood up for me especially when the conversation got nasty. Funny thing is this person hasn’t seen me in five years, so it’s not like they have seen me at home contorted in pain with heat packs attached to me and medicated up to my eyeballs.
I’m sure a lot of us with invisible conditions face these judgments and questions pretty regularly. Unless you live the spoonie life, you don’t know what it is like to be ridiculed and made to feel insecure simply by sharing your life, the good, the bad and the ugly.
For most, social media is a way to pass the time. It’s entertainment. But for those of us who do not have the luxury of having a vibrant social life, Facebook, Twitter, Snapchat, etc. are what keeps us connected to the world on a personal level. Have you been told you’re “always on Facebook?” Well, I don’t know about anyone else but many of my fellow spoonie friends also use Facebook to connect with loved ones.
I scroll through my feed to check in on them and to see how other loved ones are doing since I am not able to get out and visit people as much as I would like to. Of course I do enjoy the entertainment aspect of social media, I like the doing silly quizzes and enjoy the odd meme. I am vocal about all aspects of healthcare and politics too. I’m a pretty opinionated person, I don’t think that should be frowned upon though.
Social media is a fantastic way to raise awareness of the various conditions that fall off the radar. Thanks to selfie campaigns and social media challenges like the ice bucket challenge for ALS (or my beloved REDS4VEDS campaign) the general public know more about diseases that previous generations may not have ever heard of. Even simply sharing a meme or infographic about a condition can educate thousands or possibly millions of people worldwide.
Posting the feelings about our condition or how the health system/government let us down may come across as moaning or self-pitying, but for the majority of us, we just want to be heard. It is so frustrating to live in a country where there is an incredible lack of care (both senses of the word) and to witness the poor quality of life those with chronic conditions have.
Again, when you’re isolated from the outside world, you don’t get to vent to someone in person, like most people do. We can’t just get up and leave the house to visit a friend for a cup of tea and get things off our chest. Most people ignore these posts, and you know they will, but you also know that your fellow spoonie friends will respond and be empathetic. Sometimes just seeing a comment saying “I hope you feel a bit better tomorrow,” can brighten up your day.
Posting a wheelchair selfie or a “good day” selfie doesn’t necessarily have any motive; many of us post photos without thought, just like everyone else. People post photos of themselves in the gym or their food. What’s so wrong with us posting photos showing the complexity and inconsistency of our lives? Again, it’s about awareness. I think so many people are under the impression to be truly disabled, you must be missing a limb or in a wheelchair full-time.
As I’ve said, we do have our good days — they may be far and few between and so on those days, we take photos and post. To be honest, most of the time it’s just a way for me to keep all the photos in one place. I also love when Facebook sends me a “memories” notification. I often get to see photos of a day I’ve completely forgotten about or a post of how ill I have been. I look back and see I’ve survived so far, and that can sometimes boost my motivation to keep fighting for recovery.
The thing about social media is it has given some people the confidence to be cruel and they rarely have to deal with the repercussions of their words because they post in the comfort of their own home. In reality, the majority of keyboard warriors wouldn’t say these things to your face. These people seem to forget they have the free will to scroll on by or unfollow someone if they don’t want to see “depressing” posts. There’s a plethora of posts on social media that aren’t to everyone’s liking or taste and most of us choose to ignore them because it’s not worth losing a friend or a family member over.