Imagine Hating the World That You’re Still Fighting to Survive In
Beyond The Notes - Part 1 of My Story
There’s a particular kind of exhaustion that comes from fighting a battle you never asked to be part of. It’s not the exhaustion that a good night’s sleep can fix. It’s the kind that sit’s in your chest, follows you into bed at night, and is still there waiting when you open your eyes in the morning.
Imagine giving years of your life to a company. Turning up, doing your job, being loyal, adapting when circumstances change and doing everything you possibly can to remain employed despite living with debilitating health conditions. Now imagine reaching a point where you feel that everything you’ve given means absolutely nothing.
“Welcome to the reality I’ve been living”.
For years, I’ve battled chronic illnesses that have taken more from me than most people will ever understand. I’ve lost independence, opportunities, confidence and parts of myself that I’m still desperately trying to find again. But through it all, there was one thing I was determined to hold on to - My ability to work. My independance. My purpose. So I fought to keep working.
I adapted. I pushed through pain. I worked on days when my body was screaming at me to stop. I tried to prove, over and over again that having a disability didn’t mean I had nothing left to offer and somehow, despite everything, I now find myself fighting for the very job I worked so hard to keep.
“When loyalty starts to feel worthless”.
I’ve spent approximately five years working for the same employer. During that time, my health deteriorated significantly. This wasn't something I chose. It wasn’t something I could control and it certainly wasn’t something I ever wanted. My circumstances changed and so did my ability to carry out certain duties. I moved away from my original role and into a home-based administrative role which allowed me to continue to contribute, work and to show I was trying. Yet instead of feeling supported through these changes, I gradually began to feel like my health had become an inconvenience.
Over time, conversations about my employment shifted between voluntary redundancy to which I refused, to then a couple months later being placed at risk of redundancy and eventually capability proceedings. Imagine what that does to someone already struggling with anxiety, chronic pain and uncertainty about their future. Imagine wondering whether every absence, every medical appointment and every day your body fails you will become another reason to question your employment. During the four months of being informed that I was at risk of redundancy to then being up for capability proceedings, I had no communication with anyone from my company. No meaningful consultations, I sent emails to HR and managers requesting different roles to then find the company were actually recruiting my original role as well as the role I was completing whilst working administrative duties.
Now imagine how this experience has made me feel.
“The Emotional Cost Nobody Talks About”
People talk about workplace procedures as though they’re simply paperwork. A meeting, a letter, an investigation an outcome or an appeal; but behind every one of those documents is a real person. Someone who has bills to pay, who has a family. Someone who is already trying to survive circumstances beyond their control. Someone whose mental health can deteriorate with every unanswered questions and every new piece of correspondence.
I’ve cried. I’ve panicked. I’ve struggled to sleep. I’ve questioned myself, my worth and how much longer I can keep defending my right to be treated fairly. I’ve reached out about the impact this situation is having on my mental health. I’ve raised concerns about my welfare and there have been times when the silence I’ve experienced has felt louder than anything anyone could have said. What makes this painful is that I’ve never expected special treatment…
I’ve only ever wanted understanding, communication, reasonable consideration of my disability and a fair opportunity to continue doing a job I’m capable of contributing to with appropriate support. Is basic compassion really too much to ask for?
“I raised a Grievance, but the fight didn’t end there.”
There comes a point when staying quiet is no longer an option. I raised a formal grievance because I believed serious concerns needed to be addressed. I wanted my experiences acknowledged, my questions answered and the decisions affecting my employment properly examined. So, I provided information, I explained my circumstances and I participated in the process… and then came the outcome.
Reading the conclusions of an investigation into something that has affected your life so profoundly is an experience I wouldn’t wish on anyone. Especially when you feel that important concerns remain unanswered. I am now challenging that outcome through the appropriate process and that is perhaps the most exhausting part of it all.
I’m still fighting, still gathering evidence, still revisiting painful experiences, still reading through correspondence and still trying to explain why certain decisions and actions have affected me so deeply. All while continuing to live with conditions that don’t give me a day off from pain. People see the emails, the letters and the determination. What they don’t see is the person sitting behind the screen, sometimes in tears, wondering how life became this difficult.
“Disability Doesn’t Make Someone Disposable”.
Disabled people deserve careers, we deserve independence, opportunities, dignity and respect. We deserve to be assessed as individuals rather than reduced to attendance figures, medical conditions or assumptions about what we can and cannot do. Being chronically ill doesn’t mean you’re lazy! Having unpredictable symptoms doesn’t mean you’re unreliable as a person. The days I couldn’t work, I was able and willing to work back on the weekends and funny enough; this was allowed by management!
“We shouldn’t have to destroy our mental health trying to protect our right to work”.
There is something very wrong with a world where people can fight so hard to remain productive members of society, yet still feel as though they’re being punished for the very conditions they cannot control!
The Silence that hurts! One of the hardest parts of this experience has been feeling alone. When you raise concerns about your mental health and workplace stress, you’re not necessarily asking somebody to fix everything overnight. Sometimes you’re just asking somebody to acknowledge that you’re struggling, to ask if you’re okay. To recognise that the person behind the formal procedures is still human. For me, the absence of meaningful welfare contact during this process has been very upsetting. I’ve had to keep explaining the emotional impact whilst feeling that my wellbeing has been pushed aside. The funniest thing about this subject of my blog is the company I work for, the HR staff, the management are all Mental Health First Aiders! Let’s not forget the company states “Disability Confident”. How hilarious is that.
“Imagine Hating The Word”.
I don’t think anyone understands what it takes to make someone who once had so much fight in them begin to feel completely defeated. I’m not just angry about work. I’m angry that compassion sometimes feels optional. Angry that someone can be physically unwell, mentally exhausted and financially frightened, yet still have to find the strength to challenge decisions that affect their entire future. I’m angry that I’ve spent so much of my life fighting to heard, both medically and professionally and I’m angry that even when I do everything I’m supposed to do, it can still feel like I’m getting nowhere.
“It’s F***ing Exhausting”.
Despite everything, I’m still here. I’m still standing up for myself, challenging the things I believe have been handled unfairly and I’m still refusing to accept that living with a disability somehow makes my contribution worthless. I don’t know how this employment dispute will end, nor do I know what my professional future looks like and I won’t pretend that I’m coping with all this because I’m not. This experience has affected my mental health in ways I’m still trying to understand. But, I know that my health conditions don’t erase the years I’ve worked, the skills I've developed or the effort I’ve made to remain employed. I know that speaking up matters, even when it feels like nobody wants to listen. And I know that there are other people sitting at home right now, frightened about their jobs because their bodies are no longer allowing them to work in the way they once did - this blog is for them too!
And as for me? I never wanted to battle my employer, but I will do whatever it takes to show the world my capabilities. I will continue to challenge the decisions I believe are unfair. I will continue to ask the difficult questions and I will continue to demand answers, transparency and accountability through every appropriate avenue available to me. Because why? Because what’s right matters! Because disability rights matters, mental health matters and because nobody should be made to feel that standing up for themselves is a battle they are destined to lose. I will not be frightened into silence. I will not allow my health conditions to be used to make me feel less valuable and I will not abandon my principles simply because fighting for them has become exhausting.
I’m not claiming to have every answer, and I know that challenging an employer doesn’t guarentee the outcome you want but I know what I’ve experience. I know the impact this has had on my life. And I know that my concerns deserve to be properly heard and fairly considered.
