Hey there, hi there, ho there!
Sorry for the radio silence, I had been in London again for tests and treatments and then I had some pretty bad issues with my neck. After almost two weeks and muscle relaxers, it’s finally under control. Interestingly, the muscle relaxers seemed to help my general widespread pain. I do have chronic tendinitis pretty much all over my body so obviously muscle relaxers would be helpful. Unfortunately my GP won’t allow me to have them long term in case I start sublimating and dislocating more often. Anyway, I’ll update you with London in next week’s post but I really wanted to get something off my chest this week.
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 socialise with friends. 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 judgements 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 Buzzfeed quizzes and the odd meme too. 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 our 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 have any motive, we 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 are 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 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 people the confidence to be cruel and 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. Also, these people forget they have the free will to scroll on by or unfollow someone if they don’t want to see “depressing” posts (yes, my life was too depressing for this lovely family member). There’s a plethora of posts on social media that aren’t to everyone’s liking or taste and most of us choose to either ignore them because it’s not worth loosing a friend or a family member over.
Anyway, I just wanted to get this off my chest because it is something that has been bothering me for awhile.
Until next time,
15 thoughts on “Disability and Social Media”
I really feel this. I’m relatively newly diagnosed/using a wheelchair, and I haven’t faced putting a wheelchair picture on Facebook yet because I’m worried about the response x
Do what you feel is right for you and feck the begrudgers. x
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This is so true, people interpret your message based off their own assumptions. It’s so hard to really know what a person is going through and social media is the worst for down playing and sugar coating real life. I say keep being real – and try not worry about what others may think.
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Amen to that!
in lots of ways, people dont really get that what they see on social media is not a whole reflection of someones whole life. its a snapshot. im sorry people have been lacking in understanding of your situation, thats awful. social media is great, imo, for sharing stories with like minded people.
Thanks for that. Yes, Social Media is only a snapshot of our lives.
Shared! I have family members that I hope will read!
I hope so too, Kristin. x
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So so true! Nothing else to say really – this was perfect! xx
Thank you so much 🙂
I face this every time I want to go out with my kids. How can u be that sick if you have kids and want to take them out?? That’s what I get. The ignorance and arrogance of people baffle me!
Oh that’s the worst! I was out all day yesterday with my kids and now I can’t even get dressed today but nobody will see me sitting at home in my pyjamas, exhausted from just going out to lunch and to the playground.
I made the mistake of posting on social media that I receive disability benefits. I also posted that I enjoy cycling. Well, that was a mistake. I was accused of scamming the disability system because anybody who can ride a bicycle is obviously not disabled.
I came here via your instgaram, and this was just the post I needed to read today. I’ve experienced this from people I used to call my friends; and, along with the doubting of the validity of my illness, if I ever needed to cancel plans they’d become moody with me and say things like ‘Well, you were OK yesterday because I say XYZ on Facebook’ – not understanding that behind the photo they had seen was a whole heap of pills yet a body still feeling on fire in agony. They couldn’t see the whole day I’d spent in bed beforehand to have enough energy to leave the house, then the whole night awake afterwards due to the excruciating pain. In the end, for my own mental health and happiness, I had to cut people who behaved in these ways out of my life; it was difficult and desperately sad, but I now feel under so much less scrutiny. Now, I only count people as good friends if I know I can cancel plans (which I depressingly have to do frequently) without being made to feel guilty or like I’m a liar.
I find this aspect of having a chronic illness so hard, so thank you for speaking up – and thank you for making me feel less alone.
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I’m glad my post has helped you feel less alone. This is why I write ❤