I grew up during the time Facebook was first launched, and it became a huge part of life for almost everyone. I remember going home after school, and chatting to all my school friends straight away, and posting embarrassing photos of each other! Thanks to Facebook and YouTube, I made a lot of new online friends that I enjoyed conversing with.
However, I soon discovered that most of these people were very false and I had to be selective in who I friended and culled the rest. I still get lonely and feel very isolated from the outside world. This is where the use of social media comes in. I have people as friends on Facebook, especially from the equine world, that I don’t know in person. You get to know these people really well, and even feel personally involved with their lives.
However, most of the posts you see on social media are all a front, and not necessarily what these people are like in person. If you scrolled through my Instagram accounts, you would never know anything was wrong with me. I can make my life seem perfect just by uploading a few photographs every now and then.
Recently, I started to film makeup tutorials to put on YouTube. If you didn’t know about my disability before hand, you would never realise whilst watching these videos. I look like I don’t have a care in the world when that’s not in the slightest bit true. I can easily create a whole life for myself, without even having to leave my bed!
When I had my first Scoliosis surgery, during secondary school, I never spoke about it much. I didn’t want people to think I was useless, just because I needed surgery. I explained my situation as much as possible to my friends, but never made a huge deal over it. I thought it would be just one surgery, then my back to normal life. Unfortunately, it didn’t quite go to plan.
As I didn’t make a huge deal over my Scoliosis, people started to think that I was lying about how major the surgery/recovery was, and that I was just overreacting. I would have to show them my scar, or else they wouldn’t believe me. I was also relatively shy during secondary school, so I would just suffer in silence. I was so nervous about making a scene, that at one point I even spent an hour suffocating during a lesson, as I was having an allergic reaction to the metal rods that were holding my spine up! I just laid my head down on my desk, and counted down the seconds till the end of the day, so I could get some help. A few of my classmates noticed something was wrong, but never said anything to me. They basically chose to ignore the reason that I was on the verge of passing out.
I do regret not asking for more help over my spine issues, as now no one understands how I went from a normal energetic teenager, to chronically ill and unable to walk, in the space of a few months. Their attitude towards it was that if I had never complained about it whilst around them before, then it’s not really happening. That’s what it’s like to live with an invisible disability. The thing is, I was always in a lot of pain. Even before my current problems started, but I just rarely spoke about it. I know from personal experience that a lot of young people don’t know how to react to those with disabilities/illnesses. In my case, after I had to turn down evenings out when I wasn’t up to it, friends gave up and eventually it was easier for them to just cut me out totally.
My college friends never knew much about my original back issues, due to not knowing me during that time and I didn’t feel the need to speak about it much. They knew I had some spine issues, as they had seen my scar when I wore cropped tops. When my health started to deteriorate, I would always try to speak to them about it, and let them know when I was having further surgeries. I was in and out of hospital for appointments, and had 3 different procedures in the space of 6 months whilst I was friends with this group of people. It never really clicked with them how much it was affecting me, emotionally and physically. That’s what caused our friendships to begin to break down, till I decided to rip the bandaid off, and just break all ties with them.
So, there I was 17yrs old, stuck in bed, in chronic pain 24/7, and had not one single person my age to talk to. Not being able to express myself to anyone was very difficult to deal with. I am very close with my parents, but there are still things I wouldn’t talk to them about, which is where friends come in. That’s when I turned to social media as a way to express myself. I found it helped a huge amount, as I could write about how I felt whenever I needed to; whether it was to do with the way I was feeling about a certain situation, or updates about what the next part of my treatment plan was. It was my form of therapy!
A lot of people started to see it as me just moaning nonstop, and for some bizarre reason it personally affected them to the point they would post horrible things about me on social media. I constantly got asked why I post so much on Facebook, when I apparently should be keeping it to myself. The thing is, I don’t care if anyone reads any of my posts or not, and I’m definitely not after any pity. Social media just provides me with a platform where I can write out my thoughts. It also reminds those that think I’m lying, that I do have a very real, chronic disability!
Twitter has also become a massive website that influencers can use to keep up with their followers. I have never been into Twitter, just due to the reason it has a word limit on what you can post. I actually only started a Twitter account as someone notified me that a few of my old friends were writing about me on this very public website. I found this hard to believe, as I was still speaking to a few of these people up until very recently. Once I finally made an account, I found out they had been posting about me the entire time we were friends, knowing that I couldn’t see it, as they knew I didn’t have an account! It was mostly them saying that there was nothing actually wrong with me, I was just being lazy, and didn’t deserve to have my horse. Even on my 18th birthday, there were many tweets about me being “too lazy to go and see my own horse”, when this person knew how ill I was. I wanted to scream out of frustration that these people who I thought were my close friends, didn’t care that I was chronically ill! They would rather just write nasty things behind my (curvy!) back about me instead of trying to understand my situation. This wasn’t just one person doing it either, there were quite a few others doing it as as well. I’ve even had people I don’t even know, who have never met me before, write about how stupid I am for thinking I’m disabled, and that it’s just a “bit of back pain”. It’s very sad to think that these people were, for some strange reason, so personally affected by my life that they couldn’t stop thinking about me!
So, that is why I post about my disability quite openly on social media. It reminds people that I actually have an all too real, yet invisible illness, and that I am 100% not lying about it. Why would I even think to lie about something that has caused my life to take a complete detour, and stop me from doing something that I love so much? I get no gain out of that whatsoever! They should try 24 hours in my life.
There are always going to be individuals that hide behind the relative anonymity of social media – they’d never be brave enough to say it in person. If writing about my situation on social media helps me to deal with having a painful disability, then I don’t intend to stop just because a few incredibly ignorant people don’t like it.