With Millennials getting a pretty hard time in the press of late (cheers Simon Sinek) I’m doing a series celebrating how AWESOME both millennials, and The Internet, can be. This time, I am focusing on how the internet can help keep humans connected if they have a disability or a chronic illness.
For those of you who may not know, I’ve had a whole host of super fun medical issues. After a spinal injury in my early 20s, I suffer with chronic pain and mobility issues (if you’re nosy, you can read more on that here) and on a basic, practical level, the internet has CHANGED MY LIFE. This isn’t even an exaggeration, despite my constant desire for hyperbole. It’s how I shop (for literally everything), it’s Uber or Hailo or in the olden days, Addison Lee. Whenever I’m in flare, facetime, social media, even the bloody news, is only a click away so I can still feel like I’m connected to the world around me – even though I’m stuck in bed with 17 water bottles trying to get my muscles to chill out. If ever I think about it not existing, I feel genuinely breathless with fear.
When people scoff about ‘young people’s inability to leave the house without phones’ my throat sticks with how ableist that is. Whilst I’m thrilled for anyone who doesn’t need to rely on it to exist, for some people it is genuinely vital.
I wanted to delve deeper into the use of social media and the internet for those with disabilities, so spoke to my lovely friend Josie. I have followed Josie on Twitter (@porridgebrain ) for years and we have slowly become pals – bonding over the shared experience of living in unreliable bodies. Put simply, I am in awe of her. The way she deals with incredible challenges with kindness, dignity and humour is second to none. I feel like she is EVERYONES Twitter favourite, and for good reason.
I’m so happy to share her story of connection through social media, so you too can feel a little piece of her magic. The world could use many more people like Josie if you ask me. Okay, I’ll stop gushing now, and get to the business of being nosy instead.
Firstly – and going into the exact amount of detail you’d like – in what ways does your health affect your daily life?
Sometimes it would be so nice to be able to say “Oh I have X” and everyone could go “Ohh right!”, but the best I can say is that I have a weird combination of unexplained syndromes. It’s not very sexy or exciting. I can only apologise.
Ever since I was little, I’ve had severe pain, fatigue, and a host of other malfunctions. We’ve never quite got to the bottom of why my body acts oddly, but it gives me a combination of neurological, vascular, connective tissue and autoimmune issues. As part of that, I also have something called POTS and dysautonomia. My body doesn’t know how to adjust my blood flow to changes in my position, or to react properly to things like digestion, temperature, and movement. It’s like I got ten different diseases’ leftovers with none of their treatment options. My consultants hate me.
Some years I’ve been better than others, but I’ve never got to live a ‘normal’ life as such. My disability affects and has affected absolutely everything my whole life, although I did manage to have a baby, which I’m forever grateful for. My son is 8 now, and home has been just me and him since he was 2.
The last couple of years have been the most challenging as my symptoms have got worse and harder to control. We’re not sure if things will improve again, or if this is a progression of an illness we don’t understand (many genetic illnesses do get more disruptive when you hit your 30s) so it’s lots of wait and see. Managing pain is a very big feature – I honestly can’t remember a day without it. I can only walk very short distances now so have to use walking sticks, a wheelchair, and a mobility scooter at the grand old age of 35. I can’t leave the house alone for long which is hard. I style it all out with great hair.
You do have fucking GREAT hair.
I find that social media and the internet is something I use and rely on every single day to make managing my health easier – in what ways do you think they have made an impact on you and your situation?
For me, social media and the internet is the difference between having to live a life entirely isolated and shut off (which is how life was for me before the internet), and one where I can run around the whole world. Without it, I would only ever get to see and speak to a tiny handful of people, and I would be almost completely invisible. When you’re disabled, you’re easily dismissed and forgotten, but social media and the internet now lets me live this big, wild existence amongst the rest of you. I’ve made hundreds of friends. I get to be creative and funny and daft. I get to have a voice. I get to play. It is freedom for me.
It’s also been very important for my mental health and my sense of perspective. When something challenging happens to you, it’s always tempting to cast yourself as the grand protagonist, with everyone else as shadowy players in your all-important story. But Twitter reminds me that we’re all suffering. I am not special. It’s humbling and grounding. Every day, it gives me opportunities to open up and reach out to other people and their stories, not retreat into my own pain.
It has, without a doubt, helped shape me and made me healthier, saner, braver, kinder. It keeps me growing and stops me becoming fixed and rigid in myself. Hurray for that.
Hurray indeed. And your internet presence helps others – this I know FOR SURE. What about work? When did you start using the Internet as a career tool?
It has certainly made a huge difference in the last few years. I started out writing tweets, then blogs, then guest articles and different projects. I ran a writing community online for a while which was fun and then started writing on behalf of different people, first for free, then for money. By growing my skills and my audience, I ended up setting up one little creative writing-based business, then two!
Work outside the house has been almost impossible for the last decade and is probably not something I’ll ever manage again. I love to work though, so I’m achingly grateful that I still get to. It gives me hope. It lets me support me and my son. I’ve only been writing a few years, but I’m realising that maybe if I keep working and growing, I can have a career after all, if only a small one.
How do you determine how much you share online with regards to your health? Do you ever feel nervous of oversharing?
I do. It’s not easy. When I started using Twitter, I was more mobile and able to do more, and I rarely mentioned my health issues at all. I didn’t hide it particularly, but I didn’t make it a big thing. It has got harder more recently, though, as my life has been progressively more affected. Pretending it wasn’t happening in order to make me feel more… I dunno. Normal? Attractive?! It has been very tempting at times, but it just feels dishonest and a bit shit. Disability is such a huge part of my daily life now and I don’t ever want to be ashamed of that. I’ve always been glad that if/when you meet me in real life, I’m exactly how my Twitter personality suggests. I want the two to marry up, so that means being a bit vulnerable and imperfect online too. I don’t want to be an act or a persona. I want people to feel they’ve got the real me, so I do share quite a bit.
I am still careful, though. I’m more conscious these days of how I use words and how writing things publicly can change how you feel. Words have so much power. You tweet something, you give it shape, you pin it down. If I tweeted every thought, symptom, pain, I would fill the internet with a storm of dramatic, changeable feelings. That’s not helpful for me or anyone else. The pain and symptoms I experience are severe, but they come and go. Feelings come and go. Often I need to give that space and see what happens, not to try and instantly give everything a narrative and meaning. It’s not good to try and define everything there and then. It makes things too fixed and grandiose. And it makes me take myself waaaaay too seriously. That means I have to give space to let things change and not share everything all the time. For me, it’s much easier to let a symptom or a difficult physical experience come and go if I’ve not just written tweet after tweet about how awful it’s feeling. If it’s still an issue after a few hours or so, then maybe I will, but I never tweet reactively now. That’s what drafts are for (and best friends).
Yes I often feel the same. My pain peaks and dips with such regularity that I can be in agony at 10am and much better by midday. It’s often easier to keep those things to yourself. So, have you ever found your use of social networks to be problematic in any way – or something you’ve needed to detox from?
Definitely. As much as social media has been good for me, there are lots of times it just HURTS. It can make the contrast between my reality and other people’s way, way too sharp at times. Seeing the freedom that people have to do normal stuff, chase opportunities, have adventures, socialise, date – it’s too painful to bombard myself with that all the time. It’s no one’s fault, but it can all make me feel very elbowed out and isolated. I have to manage that carefully so I don’t get all bitter and twisted up inside. I don’t want that. I had to stop using Facebook entirely for that reason.
I’ve also learned that I need to be careful not to use Twitter to try and grasp after stuff I feel I’m missing or to numb things I’m avoiding dealing with. It can become addictive and compulsive, that endless need for attention and affirmation and feel-good but it never helps for long. I have to learn to face things honestly and bravely in my real life, and that means not using Twitter as a crutch. All this sometimes means stepping away for a while. I never do a big flounce off but there are days and weeks while I’ll be much quieter online and that’s why.
Oh gosh, I so completely understand this. Sometimes I feel SICK with jealousy over other people’s ‘easy’ lives and the great privilege of not living in pain. I find I have to watch that feeling so closely so it doesn’t float out of my grasp and become big and angry and ugly. I bury myself in my favourite places online to counteract it. Where is your favourite space on the internet or favourite person to follow online?
Lovely, bonkers Twitter. It drives me crazy some days, but it’s given me a voice and a world to play in and the best friends I’ve ever had (one of which, it turned, lived three streets away). I love getting to know people on there.
I struggled to pick one person as a favourite, but I think I’m going to say @HeardinLondon. Following HiL’s story through the years, spending time with her in real life… she’s taught me more about brave, silly, kind vulnerability than anyone else. I’m grateful for her every day.
Josie, thank you so much. You are surely the most precious soul I know. Thank you for living your truth so bravely, out loud, in the open. You’re so incredibly important.
Thanks for reading guys! To see more of me, follow me on Twitter @susieblues and on Instagram @susiebluesyy – I am extremely thirsty for followers.