The above quote will be tattooed on me someday. I love it and I love Oscar Wilde. I also thinks it rings true for my life, especially my illness. I don’t see my disability as a tragedy or something awful now, but when I was growing up with chronic pain, I certainly felt like it was a death sentence. I didn’t see any way of getting used to the agony and everything associated with my condition, I thought it’d hold me back (and it did for a while), and I wanted to be ‘normal’.
Wisdom definitely does come with age, and as I learnt more about my health, did more, and talked to more disabled people, I grew.
If you follow me on Twitter or are a regular reader of my blog, you’ll know I talk about disability a lot. I’m very open about my health, physical and mental. And it’s not always happy look how awesome my wheelchair is, kind of posts. I’m completely transparent with all aspects of my life, and you’ll know if I’ve had a nasty dislocation, a migraine or fatigue has punched me in the face. I’m sharing my day to day on-goings just as someone else would a gym selfie or a rant about work. My normal isn’t your normal, but because my normal seems so removed from yours, it can come across as ranting, moaning, negativity. Yet it’s not negative to me, it’s my life.
Here’s the thing with social media, especially Twitter; the word negativity is thrown around like confetti at a wedding. You disagree with someone – you’re negative. You don’t like something/one – you’re negative. You have a bad day and express it – you’re negative. You talk about being in pain – you’re negative.
I don’t see any of the scenarios I mentioned as negative; I think if you’re constantly being an arsehole to others, get a kick out of being rude or cruel, and haven’t got a nice word to say about anything, that makes you negative, but who am I to judge?
I certainly don’t believe that if you’re sharing your day, and in my case a painful one, you’re drowning your followers in the pessimistic sea. And if you do think that me sharing my condition/pain/mental health as negativity then you might as well get in the sea.
Surely it’d be more worrying if I didn’t mention my health since it’s the biggest part of my life. I want to raise awareness and I’m going to shout about it. But there’s nothing downbeat or depressing about it. My life is just very different to others and I accept that, but please don’t suggest that I stop speaking up because you think I’m a pessimist. And let’s be honest, even if you did, I wouldn’t.
What if every time you spoke about a massive part of your life (family, friends, career etc) someone called you out for being negative? It’d suck right? I know quite a few disabled people that have separate accounts to discuss their illness because they’re slated for ‘bringing others down’ or ‘complaining too much’ by their able followers/friends. I luckily don’t have to do that, and people are always free to unfollow me and never read another word I write.
Now I don’t think I moan a lot but I do write the occasional, ‘oh fuck my <insert body part here> is killing’ tweet, but I’m in pain every single day so I think I’m more than entitled to have a woe is me moment.
Nobody, and I mean nobody can be positive 24/7. Shit happens, and we divulge our thoughts/feelings/needs online/to friends/family, but just because we mention the thing that others might deem negative doesn’t mean that anyone should be characterised as a negative person. ‘Only positive vibes’ or ‘I’ll only follow positive people’ is harmful and it makes it extremely difficult for disabled people and/or anyone suffering to ask for help. It’s especially problematic regarding disability as it’s basically society deeming that anything outside the norm is not accepted and seen as bad. It goes right back to ‘seen but not heard.’ Everyone knows disabled people exist but they don’t want to know what we go through in case it brings them down. They don’t care that our daily lives are difficult or want to know about our ‘negative’ chronic pain. But I don’t have a negative attitude and I certainly don’t think my outlook on my health is depressing, and neither are any of my disabled friends. We’re simply sharing what we live through, and yes, sometimes it’s absolutely shit but everyone else is very quick to share when they’re poorly to the world, we just happen to do it a lot more frequently.
I won’t change how much I talk about my health, and neither should you. Discuss it as much as your little heart is content and don’t apologise. If someone thinks you’re negative, that’s their issue, not yours.
Thank you for this entry. I often feel too intimidated to even mention my illness and disability even in passing because apparently even bringing it up once is "going on about it". My disability affects every single facet of my life so of course I want to mention it sometimes. I think it just says a lot about the public's general low opinion of disability, that they can only see it as something negative and they want it to remain as invisible as possible so they don't have to think about it. Plus I hate all of the "positive vibes only" attitude of the internet, it's so unhealthy.
Great blog. Bang on. Talk it out. Is help for self and others!
I love that you talk about your illness so much, especially on twitter! I love following you because you're so passionate about the things you post x
I completely understand. If you ever need to chat, I'm always about x
Exactly x
Ahhh Kayleigh, thank you so much x
Bra-fuvking-vo!! Bravo! People are so used to their normal that they forget everybody has a different version. Some may only be slightly different but some like yourself, and myself are very different. I catch myself before I write anything about my health and that sucks! My sister very off-offhandedly made a comment (whilst drunk) about me "going on about it", and i've worried that people think I'm being a negative Nancy, or just constantly whiny. But you are right this is my life now and it affects everything so I'm bound to mention it loads! So yeah I'm going back to Bravo! Thanks for saying it! xx
Thank youuuuu! Don't censor yourself for anyone; if you want to talk about your health bloody do it x
THANK YOU. I feel like I could have written this myself. It seems like those who are chronically ill have to walk such a fine line in terms of what we share, how much we share etc. I have REALLY struggled to figure out what works for ME while accepting that some friends and family don't agree with how much I share or think that I just want attention or god forbid I talk about being sick way too much. It feels like a catch 22 no matter what. Keep sharing whatever you need or want to…it helps so many of us in the same boat.
http://www.shipwithnosails.com
Thank you, glad you liked it x
I love this post and I agree wholeheartedly…I wish I could print this out and hand it to certain people, forcing them to read it!
I have no filter.I genuinely don't understand how to apply one – if someone asks how I am, I assume they actually want to know and I tell them. The number of times I get taken to the side and told that my day-to-day commentary is either "inappropriate" or "too depressing/intimidating" or so different that it makes people uncomfortable…let's just say if I had a penny every time, I'd be rather well off.
My best friend in the world sat down next to me 16 years ago and introduced himself with "do you really always say what you think? Because I think it's great."
He bought me a drink after I'd mauled him in a game of pool and told him how I thought he might change his game to beat me. He's pretty much won at least 80% of the games ever since, but I don't mind because the friend I got in the exchange is worth it 1,000,000 times over.
Thanks for being you Sarah x