I didn’t want to talk about this. I never want to talk about this. Mainly because I’m ashamed of this life, because society makes me feel this way, because I hate being this person; always have done, always will do.
But I couldn’t keep quiet, I just couldn’t. For my own sanity. My peace of mind. The things running through my head. The tears rolling down my face as I contemplate whether living my life and carrying on the best I can is even worth it anymore.
Right now in my mature adulthood I’m very open about my medical condition and my disability. I talk about my stroke and my chronic pain much more frequently than I used to when I thought concealing those parts of me was the only way to be accepted. What I don’t talk about very often is the ways in which it affects my ability to work. As in, I’ve never had a fixed job since the day it struck me down and left me paralysed – physically and mentally.
It’s not something I’m proud of, it’s not a fact I like about myself, it’s not a part of me I enjoy. It haunts me on a daily basis as I watch the people around me flourishing to their highest level of success, wishing more than anything that I could be one of those people. Twenty five, out earning thousands, showing the world just what I have to offer. But I’m not. There’s ambition coming out of my eyeballs but I can’t achieve even a fraction of that with the suffering I have to endure and the minor yet major factor of considering how much my health has to come first.
Looking back, I have moved forward since I was a lonely teen scared and fragile and with no hope for the future, and that’s what keeps me going. I have a genuine hobby, I have an escape, I have a group of incredible friends, and most of all I have freelance adventures that stop me from hitting complete rock bottom of worthlessness and failure.
My current situation is the one steady situation that’s been in place for years (but which is also uncertain and anxiety riddled alongside that with all the constant Tory cuts and changes). I receive Employment Support Allowance, which aids someone like me who has an impairment that prevents them from working a heavy duty full time job, whilst still giving them the opportunity to grow and develop and accomplish. I am in the work related activity group and I go for bimonthly meetings with my coach to discuss the optimum options for me. You can earn a sum of money per week whilst still receiving this benefit, and that’s just what I do – fully disclosed via a form filled in for permitted work. There’s my influencer marketing endeavours, my article writing, and most recently a freelance writing gig specifically run by disabled women (which despite the state of my mental health right now, I’m still really looking forward to my first paid piece going live next month). These are all done from home because that’s the only agenda I know I can 100% adhere to – done in my own time, with my own hours, in my own pace, by my own rules, and as and when I feel fit and well enough to do it.
Coming back home from my Paris trip I won, utterly exhausted and feeling the aftermath in the form of my burning nerve pain that knocks me clean out on one half of my body, what I didn’t need is to find a letter waiting for me to partake in an urgent telephone interview with the DWP. 1) How out of the blue? 2) A telephone interview? By someone with the biggest phone fear known to man? Oh hell no. 3) Let’s get my angel of a mum on that immediately. I was instantly upset as I had a gut feeling there was something wrong and reading up on local compliance interviews online set it in stone for me. I had to wait a full weekend for them to phone us back with a proper insight into what was going on and after an unsettled tummy, sleepless nights, and a whole lot of dread, my worst possible scenario was confirmed.
I’d been reported. Anonymously, apparently. Online on the 27th July and with accusations that broke my heart into shattered pieces. I don’t feel like I want to delve into detail of what was said but what I will say is that with the misconceived, malicious, and utterly bullshit statements that were stated, it must have been someone who knew me well. Nobody but family and close family friends knew the ins and outs of my circumstances and that’s what makes this even more soul destroying. It’s limited down to very few possible people and for me, that makes it harder to deal with. To think that somebody hates me this much. To know the hardship I’ve been through and still go through, and still be this selfishly cruel and spiteful. Holding my entity in the form of a button and pressing send without hesitation, being well aware how much it could break me. How much it has.
I’m “not as poorly as I make out” apparently… like it’s a barrel of laughs having a brain injury, like I lie about how I feel and what I experience for the fun of it because I get a thrill out of the prejudice and the stumbling blocks I face, like the numerous hospital appointments, the medication, the MRI scans, and the word from my neurologist are all just a myth. I mean, why do you think I only dish out the basics?? Why do you think I put on a brave face even when I’m in agony?! Because of this. Because people like this exist and it’s not just the illness you have to cope with, it’s the attitudes around you.
I shouldn’t have to explain myself to strangers but I do, on the basis of people’s ignorance towards invisible illness. From now on it looks like I’m going to have stick a sign on my head when I’m in pain or document every single moment when I’m laid on the floor or the sofa unable to move with my left arm levered as it feels like the devil has arrived to rip my skin apart. I can’t even put into words the intensity in which my pain can reach, so why on earth does some bitter nobody think they know me better than I know myself?
My guess is they’ve constructed their false assumptions by looking at my social media pages where surprise surprise, only the positive parts of my life are shown. That’s the whole point. Do you really think I’m going to speak about and showcase the unpleasant encounters? No. Maybe I should? Maybe I’m going to have to prove myself (not to quote puff daddy) with every breath I take and move I make? I only recently tweeted a summary of my thoughts:
Being on social media, doesn’t mean you’re okay. Going out, doesn’t mean you’re okay. Smiling and laughing, doesn’t mean you’re okay. Chronic physical & mental health problems do not disappear at the convenience of other’s judgement. Stop 👏🏼 erasing 👏🏼 our 👏🏼 struggles 👏🏼
— Bridie (@bridiemia) April 13, 2018
and that absolutely still stands. You shouldn’t be able to judge from what you see on the outside only. What’s going on, on the outside, isn’t instantly a match to the inside. There’s so much I keep to myself, where the light is on but I’m only functioning on auto. It’s so f*cking difficult trying to remain strong every day, to build a wall against my emotions and keep that facade up. This is mainly down to the lack of understanding from other people. What’s the point even attempting to make it evident when they just don’t get it?! Nobody gets it. Not even medical professionals, sometimes. At this stage, it’s not even dealing with my pain on a regular basis that is physically and emotionally draining, it’s living with a condition so rare and unheard of that everyone around you assumes all it is a slight niggle or ache that easily passes and I’m a picture of health otherwise.
That presumption couldn’t be more off the wrong scale.
My blog and my knack at creating content is not only my source of independence, but it’s my distraction, my escape, a chance for me to step away from the Bridie who cannot, and become the Bridie who can. The same goes for ordinary life activities. I never used to have a ~life~ until recently. I was isolated and neglectful and bored and that totally worsened my condition but life was finally good to me. It gave me a reason to be happy. To carry on as though I’ve not had a big chunk of my life taken away from me. Gave me opportunities to thrive. I’ve been told numerous times that finding something to focus on can help take the edge off my pain and it did, it does. It hasn’t miraculously cured me, my pain’s always there and is always gonna be there, but having a reason to get up in the morning means my pain doesn’t take centre forward position. I’m doing what I’ve been told, adapting my lifelong pain to my present life. The pain is a constant burden and there’s hurdles I have to overcome but I may as well overcome them because I’m going to be in pain no matter what I do. The only reason I may seem perkier lately is because I have that positive impact, and because it’s been warm and the sun rays do help a little (I really am dreading the winter).
The more miserable and stressed I am the more in pain I am, it’s why I try my best to stay well away from that dark pit. Now? Well now I’m deep in it. I feel like I no longer want to do anything. That it’s against the rules of the ableds and the privileged. That I should feel guilty for going out and making the most of the second chance I was given. That I should feel even guiltier if my pain gave me a break. That feeling better isn’t allowed, whether that be for hours or days on end. Like not being severely debilitated one day means I’m making it all up and the problems I face don’t exist after all. That when my pain is at its worst I should sigh a breath of thanks for confirming what my internalised ableism tries to invade my thoughts with, establishing my questioning of “am I ill enough?”
According to the person who obviously knows my routine and my feelings inside and out, because I go on holiday or out for a meal and to the shops, that means I’m perfectly fine. Guess what? Disabled and ill people are entitled to a leisurely life just as much as you are. To state otherwise, to diminish the value and quality of a life and of human rights, to act like having fun as a disabled person is an evil sin, is demeaning and offensive. That, my friend, is ableism, and it isn’t pretty nor clever. AND you know what else? You’re allowed to, legally and on your own terms. So maybe, just maybe, you should check your facts beforehand. Maybe, just maybe, you should stop discounting disability purely because I’m living my life. Maybe, just maybe, you should stop invalidating us and acting as though we owe you a divulge into our personal lives because we’re a liability and you’re kind enough to let us exist. Like what we should be doing is vegetating away indoors because that’s all we deserve. God forbid our lives contain anything like fulfilment and joy and friends and entertainment. Must we meet a daily struggle and suffering quota before we’ve achieved enough self-punishment to be allowed pleasure and happiness? Is that what it all comes down to?
Getting shamed into having a life alongside my disability is damaging and I genuinely don’t think I can take much more of this deliberate insensitivity. It’s why I always come to the conclusion that I’m better off alone.
What you probably don’t know is that my chronic pain fluctuates more than the British summer. It’s a perpetual roller coaster. Some days I can be relatively all right, others can be unbearable. To you, I may seem normal, but what you don’t see is the behind the scenes. What you don’t see is the preparation it takes to go out or go away. The few days of rest and early nights I must undergo to guarantee I’m going to be okay for the plans I’ve made. Even then there’s no guarantee – my pain is rigorously unpredictable and I never know how I’m going to be. But if it’s something I’ve been looking forward to?! I push myself, I push through the extraordinary pain and I try to grin and bear it, still without saying a word. If you think you know me that well, take a closer look. You’ll notice I’m quieter, I’m resting my arm on a cushion, I’m not moving around much, I’m paler, I’m dead behind the eyes, I’m snappy, I’m sleepy, I don’t have much enthusiasm, I’m not very talkative, my mood has dropped. It might not be noticeable at first sight but trust me, it’s there.
What you also don’t see is the torturous aftermath; the flare up of symptoms, the days spent at home laid down flat as I’m too wiped out to function right. What you don’t see is me debating with myself whether I should embrace the good days knowing full well I’m going to be paying for it later – whether that be hours or days later. What you don’t see is the energy it takes to complete tasks. What you don’t see is the days I’ve had to drop out of and miss. What you don’t see is everything that follows the pain. Overwhelming fatigue to the point I can’t keep my eyes open, an affected sleeping pattern because my pain tends to keep me up at night, an even bigger loss of self worth, and an even bigger rise of depression.
Am I to start listing the times my condition has troubled me whilst I’m out or whilst I’m busy and active? Would that be satisfactory for you? Like when I had to scramble for a seat to sit down walking round Primark because my left leg really was about to give way and I couldn’t take the throbbing anymore? Like when my fingers were spasming as I tried to eat my food on a birthday meal out with my friends? Like when I could barely sit on a stool comfortably because my arm, torso, and leg had locked stiff? Like when I could barely walk the next day after the busiest night of my holiday? Like when all I’ve managed to do in a day is either go to sleep or sob, losing my dignity, my mum having to brush my hair, bath me, cut my food up, because I physically cannot use my hand. Like when I am doing some writing work and I have to put it on hold because of the sensations I’m getting? The burning, the whooshing, the tightening, the hypersensitivity? The loss of concentration and motivation because my pain has decided to attack? I’ve had to separate this essay alone into about three days typing because my left arm and hand is rebelling against me. Should I have recorded that and published it within the post so you believe me? Seems that way, huh.
I’m angry and sad.
Sad that capitalism stigmatises needing and getting help. Sad that ordinary people do, too. Sad that disabled people are made to feel culpable. Like, I didn’t ask to have a stroke? I didn’t want this? I don’t want this. I try my damn hardest to keep moving onwards and upwards, chasing relief and dreams because I don’t want to be in this stationary position forever. I want to make something of myself. Consider yourself lucky if you’re able to go out and do the stuff you desire without worries and hurt on your back. That’s called entitlement. Don’t take it for granted. You never know what life could throw at you, when that barrier of illness could happen to you.
If I thought I could go out and work consistently, subject to a long term commitment and hold it down, do you think I’d still be dependent on my current state of affairs? Would I balls. If I was fine and dandy I wouldn’t be going to these efforts, I wouldn’t want to go through gruelling assessments, I wouldn’t want to avoid people, I wouldn’t want to grimace at the dreaded question of “so what do you do?”.
Believe me when I say I’ve been a grafter. I really have. I’ve been to work when my mental health was terribly spiralling after the loss of my dad; when I was caught up in my own chemical reactions and bereavement. I’ve hopped from placement to placement handling the wildness of pre-school children. I volunteered a few years back, one day a week, just to see whether I could manage. I couldn’t. Did you know I’d also applied to about five work at home jobs that would really suit me recently and got rejected from them all? Nope. You know why? I don’t announce shit to the world. I’m only doing it now because I had no other choice. I had to vent somewhere. I had to get it all out into the open.
It’s not just the prospect of a job itself, it’s everything that comes with that. It’s actually getting hired. Spending most of my young days cooped up or unwell means I don’t have many qualifications or skills to put on my CV. Throw my chronic health condition into the mix and you have every quality an employer is looking for, right? Wrong. You really think with the demand of jobs, a disabled underachiever would be the one to get it? Pfft. Open your eyes. And do you think bosses would be respectful and remorseful and understanding with the amount of time off and breaks I’d need? Why do you think I want to choose the comfort and freedom of my own home as my workplace? Even if I did feel I was capable enough to venture one day I’d be so afraid of agreeing to a contract only to realise a day or two in that I’m really really not cut out for this and my body isn’t managing. Don’t get me wrong, sometimes I do feel like I’d be ready to go on a good day but then I can wake up the next to the reality, crippled and deflated.
There’s the travelling to and fro, the temperatures and weather conditions as the year passes by, all factors that can have a negative impression on the influx of my chronic pain. Then there’s the health and safety. I have a college degree in childcare but do you really think I’ll ever be able to use it now?! Do you really think I’d be able to be around children when I can only feel one half of my body? For most environments, really, there’ll always be that underlying issue of well-being and safety.
There’s a huge difference between relaxing on a sunbed, or being around familiar faces and places who get that you might not be entirely okay, to operating non stop with an excessive workload on strenuous shifts; especially if that so happens to be on a day where I can only mumble in response to someone I’m in that much pain, where I can’t even use my left hand – my dominant hand. Not once have I ever claimed I’m totally incapable of anything, what I have claimed is that making use of that capability will 100% leave me with a decline. If you’re willing to find me a none physically-demanding job from a company who would be absolutely fine with me going in one day and then having a week off to recover for another enervating day, then you go ahead. Or better still, keep your mouth shut. If you’ve never suffered. If you’ve never walked a day in my shoes. Then you don’t get to comment. You don’t get to undermine me. You know how rotten you feel with a flimsy cold? You know how painful sunburn can be to the point you can’t touch it? Multiply that by a hundred and then tell me again my life is a breeze.
Whoever you are, I hope that you’re reading this. You probably won’t care about how devastating your actions have been but I hope you’re happy with yourself, I hope you’re aware of how much you’ve destroyed with your uneducated cowardliness.
You made my mum cry. You made my brother want to go out and strangle whoever’s responsible. You made my 75 year old grandma lay awake staring at the ceiling all night pondering with disgust and distress. You made me wish I’d have died rather than made it out of the hospital almost 8 years ago. It’s tipped me right over the edge. I’ve been balancing there for a while, not been in the best of places, and now? My loved ones won’t leave me on my own because they’re worried about what I’m gonna do, because I’ve spoke out loud that I don’t want to live like this. My heart’s been racing non stop. I’ve cried every single morning and night. I’m so paranoid and jumpy. I’ve had to go see my doctor. She was brilliant with me, telling me this sort of stuff makes you stronger, but we have agreed for me to see a psychiatric liaison nurse to speak about how I’m feeling about it. It was the final push. It’s set me back a good 5 years, back to where there was little to no progress with my mental state and I was pretty much housebound.
I’m empty. I’m numb. I’m at a loss at what to do with myself. I don’t even know who to trust anymore. I’m going round in circles with no finishing point. I already feel less of a person with no sense of purpose, now I’ve been made to feel completely non-existent. Am I being watched? Is everyone around me surveilling me and assuming my ability with a grudge? Walking on eggshells is all I’m gonna be doing from now on.
I’m just gutted. Completely crushed. All those questions looming. Why did you do this to me when I don’t ever do no wrong to anybody? How can you be so thoughtless and heartless? Forgetting everything I’ve battled and labelling me as a con? I know it’ll get better because it’s the only thing I’ve learned on my rocky journey to get where I am but for now all I can do is keep being honest and keep my head up.
Please just bear with me on this. It’s still a lot to take in and to reveal. Especially with how inconsiderate and savage the internet can be. I’m so so scared of getting a backlash from this post and this announcement. I’m terrified the people close to me are going to perceive me in a different light and that I’m gonna be even more judged than I was before broadcasting this part of me, but all I can do is put my faith in those who take their time to understand me, my situation, and why I had to do this. I’m still quite vulnerable. I don’t think the low spirits will disappear for a while and I don’t think I’ll want to talk much after pressing the submit button, but I had to get it off my chest. Especially today on an extremely naff pain day. It’s made me more eager to voice just how shit it can be, how shit it is.
I’m just grateful for the kind and decent people there to support me. At least I know you have my back! I don’t think I’d be keeping going without you. My immediate family have been amazing, my best friends don’t even know what’s wrong yet and still they’ve been amazing. My grandma’s sat with me and talked to me everyday this week. My grandma’s friend’s sent me some of my fave chocolates to cheer me up. My brother’s done his best to make me laugh. My mum’s provided the cuddles. My auntie’s been round with some flowers, a teddy, and a little sign that says ‘never let anyone dull your sparkle’ and you know what? I’m gonna have to listen. I’m gonna have to fight it. Everyday of my life is a fight but if there’s people out there who want to make it harder for me then all I can do is put on my armour and contest*.
*disclaimer: with only one good side of my body and pain to follow, of course.