I haven’t written much for my blog lately. It has not been a good month health wise, mentally or physically. I’ve been in a lot of pain and my fatigue has been absolutely crippling. I’ve also been pretty down, and I tend to retreat into myself when that happens. Living with a chronic illness is challenging for many reasons, and every so often the darkness surrounds me, and I can’t quite seem to find my positive. Instead of writing about it, I felt no motivation to do anything other than hide. I’m breaking out of that darkness today and hope to bring you plenty of articles in the coming days and weeks. I also hope to bring you some new videos. If you haven’t already, check out my latest videos below.
Today I wanted to write an article about part of the reason I’ve been struggling to keep my head above water these past few weeks. My work capability assessment arrived in the post days after my birthday. This is an extensive questionnaire the Department of Work and Pensions require me to complete every couple of years to assess if I am well enough to work or not. This is problematic for many reasons, not least because I have an incurable illness which is never going to get better. In fact I realised while completing the questionnaire, my heath is only getting worse. Despite this fact, every few years, I am strong armed into facing how much I have lost, and continue to lose, because of my health. This is all to keep receiving a small amount of money that will never compare to the salary I used to earn. However, it is money we could not survive without. If we could, I wouldn’t put myself through the mental, or physical, torture of completing these forms.
I understand, in part, why it is necessary. However, for long term, chronic health conditions I think it is entirely unnecessary. I don’t think many people understand how much it changes your life when chronic illness or disability takes your career. I haven’t worked since June 2016, and yet two and a half years down the line, I am crying as I write this. I cry when I get the letters about my benefits, fill out the questionnaires, reflect on the dreams I once had and have now lost. Here are 10 things I wish you knew about losing your job or being unable to work due to chronic illness.
You lose a huge part of your identity. I placed a huge amount of value on my career. I had worked since I was 14 years old. I worked part time jobs, sometimes two at a time, throughout school. I worked full time to save money before I went to university. I worked part time jobs throughout university, I worked full time to fund my own Master’s degree and I worked full time after I finished it right up until 2016. I based my A Levels around what I needed to qualify as a Forensic Psychologist. I completed a Bachelor’s degree and Master’s degree in Forensic Psychology. I obtained full time work in forensic settings to gain the necessary experience to do stage two and go on to fully qualify. I worked in jobs I hated to pay the bills, I worked in jobs I loved and miss every day. I put up with discrimination in the workplace after falling ill. I sacrificed my personal life to keep working after I fell ill. I forced myself to smile through the pain, push on through total exhaustion.
I forced myself smile in the face of hurtful words and actions. I gave it absolutely everything to try and stay in employment. It wasn’t enough, I was always going to lose.
The stress made my health decline further and I broke physically and mentally. I held on to hope and pushed myself to take my former employer to court. I stood up and spoke out in the hope I could affect change and be a voice for those who had experienced the same. It broke me even more, but I do not regret it. I did what I believed was right and yet still I lost so much of myself. I had so much to try and recover from, but the hardest thing was that losing my job, and my ability to work, left me with a huge void in my identity. I had no idea how to fill that, and I still don’t. Without work to fill my days I am left feeling like I have no purpose and contribute nothing of value to society. Worse than that, I had to give up a dream I’d had since I was 15 years old. I’m not sure how you recover from that.
Maybe my career shouldn’t have been such a huge part of my identity. I’ve learnt in recent years that success and happiness come in many forms, and none of them have to be from a job. However, without my career, and my dreams, I wasn’t me anymore and I’ve spent the last few years trying to work out who I am without them. I’m now trying to learn to value and love myself for everything that I am, not everything I am not.
Claiming benefits/welfare is not easy. I do not care how many people say there are loads of fakers and ‘chancers’. Benefit fraud accounts for just 1% of the overall benefits and tax credits expenditure in the UK and less than benefits underpaid and overpaid due to error. Benefit fraud represents just 2% of the estimated annual fraud in the UK. To put that in perspective, public sector fraud accounts for 8% of the total estimate annual fraud in the UK and tax fraud accounts for 69%*. So, who is the real problem here?
Benefit fraud, like all fraud, is wrong. However, there are very few people fraudulently claiming. The way disabled and chronically ill people are treated by the system you would think we accounted for the 69%. It is a horrific process, to gain very little. I personally claim benefits which are paid out from what I paid in, contribution based. Like many chronically ill and disabled people I worked for years and paid a lot of tax. Speak to anyone with a chronic illness who is unable to work, I guarantee you they would give almost anything to be well again and be able to work. Getting disability payments, a blue badge or a free carers ticket to something is not a perk. I would give up all of it, and so much more, to have my health back and to get up tomorrow and go to work. I’d give almost anything to work one of the jobs I hated again, because that misery beats this misery.
To claim benefits, I have to fill out questionnaires with about 20 pages. I struggle to write even a few words these days because holding a pen is agony. I can’t type the forms because despite the fact electronic versions are supposed to be available, they are not. I must have assessments where somebody not qualified in rheumatology, who knows nothing about my condition, makes snap judgements based on their perceptions from one meeting. I am savvy to the process and request it is recorded, take a companion and have them make notes, because the assessors are known to lie and deny benefits. It is exceptionally stressful. They ask deeply personal questions and the whole process is nothing short of humiliating. I can’t imagine anyone choosing that, over being well and being able to work and earn a decent salary.
Benefits aren’t the lottery. I used to earn a good salary. If you divided my benefits now over 37 hours a week, I would be earning a lot, lot less than minimum wage. However, my home life has not changed, my bills have become more expensive as I am home all the time, and somehow, I am expected to survive on around a 3rd of my old salary. Who would choose that?
You carry the weight of shame. There are certain stigmas attached to claiming welfare and being unemployed. Even if this is not right, they do still exist. I feel deeply ashamed of being unemployed, even though it is not a choice and I have no control over it. I am embarrassed that people may view me as a scrounger. I hate that people who have never experienced any of this, make snap judgements and say hurtful things without considering the lasting damage it can do. I hate that I feel so ashamed, and I hate that I live in a society that sees you as less if you aren’t contributing through employment. We all matter, and we all contribute something of worth to this world, just by being in it. Our worth is not measured by job title or the salary we earn, my status is no less because I am unable to work. Despite knowing this, I still feel shame.
You dread the moment you meet someone new and they ask, ‘what you do?’. This is normally about the third question we ask someone new when we meet. We ask their name, where they’re from and then we ask them what they do for work. Why on earth is this the third most important thing about someone? Why don’t we ask what their interests are, or what they like, or what makes them happy? As someone who doesn’t work, I dread this question and the conversation that follows. I have tried many responses, including saying I am temporarily not working due to health and swiftly moving on to what I used to do for work. After two years this one is becoming a bit of a stretch. I sometimes state I am a student, because I technically am, even though I am on a break from my law studies due for health reasons. I have tried the truth and I can never tell who feels most awkward with this answer, me or the person who asked the question. I hate this question. I hate it when I’m asked, I hate it when a form asks it, or my insurer asks it or in any other scenario. It makes me feel embarrassed, awkward and like if I’m not employed I am somehow worth less. Isn’t it about time we stopped assigning worth based on employment status and stopped thinking this is one of the most important things about people. We are so much more than a job title, regardless of employment status.
You must come to terms with losing your dreams. I’ve already covered this in number one, but there is more to say on this one. I used to believe that with hard work you could achieve anything. Learning this wasn’t true was soul destroying. I realised the motivational quotes I’d spouted for years, the mantras I’d placed over my desk at university and the determination I’d always prided myself on, were not enough. Hard work was not, and will never be, enough when you’ve lost your health. If your health means you are unable to work, it doesn’t matter how badly you want to, you can’t. Getting a chronic illness changed my world view dramatically but giving up on my dreams was perhaps one of the worst things I had to face up to.
You worry about money. I’ve always been very financially savvy, I’ve always been a saver and budgeted. Thankfully this means we have savings and can still do nice things. However, it also means we had to adjust from having two full time salaries to having only one. We had already bought a house before I got ill. We sensibly took out a mortgage that we could pay with only one salary, but I never expected when we made that sensible decision, that it would be the difference between keeping our home, or not, a few years later. We hope to have a family soon, and I never thought we would have to worry as much as we do about how this will impact us financially. We will manage, but it won’t be as easy as it may once have been. We have had to cut back on things and change how we shop and live. I’m home all day and in the winter it gets cold but I loathe putting the heating on just for myself. It seems wasteful and the bills are high enough as it is. I can see why heat poverty is a thing, and why many people must choose between food or heat sometimes. I often worry about the future, in a way I never used to, because it doesn’t matter how good you are with money if you don’t have any to save.
Considering future employment is terrifying. What happened to me in my last job messed me up. I used to believe in equality laws and that if you were good at your job being disabled wouldn’t disadvantage you. I was wrong. If I am ever well enough to work again, I will have to go back into the job market knowing those laws cannot always protect you, and that discrimination is very much alive for disabled workers. It will mean I am less employable, no matter how qualified. This is not right, but this is reality. It is a reality I hope to challenge and change in the future. However, I feel for disabled workers and disabled job seekers, it is a hard world out there and they are not given the same opportunities as able-bodied workers. The very laws designed to protect us, can be gotten around by clever employers and just because you don’t hire someone and state their disability was the reason why, it doesn’t mean it wasn’t the reason why.
You constantly feel like you must prove yourself. When I was working, I felt like I had so much more to prove than my able-bodied colleagues. I was not just an employee, I was a chronically ill employee. I felt I had to prove to my employer that I was worth keeping around. I felt I had to work twice as hard to make up for sick days I took, even if I rarely took them. When you are a chronically ill employee you don’t take sick days as often as you should for fear of being penalised. I would drag myself to work when most people would have been calling in sick for a week. I worked hard, stayed late and smashed my targets every month. Nothing was too much to ask and my home life suffered, all because I felt I had to prove my worth as a chronically ill employee.
You will grieve working life, even if you complained about it before. You never know what you’ve got until it’s gone do you? This is how I feel about working. I’d give anything to come home after a long, difficult day and complain about it to my husband. I’d give anything to make our lottery wish list and talk about giving up work when we had our millions. The reality is, no matter how difficult working life can be, I’d give anything to be well enough to work full time. It is a seemingly endless grieving process. Try as I might, when someone I love, or even some random on Facebook, gets a promotion or a new job, I am filled with envy. I am also happy for them, I will never begrudge someone success. I just wish I was part of the rat race again, and you can never understand the heartbreak of stepping out of it when it wasn’t planned. Retirement, lottery wins or any other wonderful reason for stopping work comes without heartbreak or loss. When you have to stop working for health reasons, even if you hated your job, it is devastating. I loved the work I did, there isn’t a single day that goes by when I don’t miss it. Every single day without fail, even if it’s only a fleeting moment, I am sad for the life I lost and the work I had to give up.
You are envious of every single person who gets to complain about commuter traffic or Monday morning misery or weekend blues. I’d give anything to sit in that traffic again, stressing about being late and desperately trying to get the traffic reports on the radio. I’d give anything to wake up on a Monday morning and realise with dread I have go to work and the weekend is over. I’d give anything to celebrate that Friday feeling, or have a difficult client, or worry about how I’m going to squeeze in lunch between back to back meetings. I’d give anything to set my out of office and have the dreaded return to work feeling after a holiday. All the things that once drove me crazy, would now be a dream come true.
You realise how lonely the world is without work. You can never appreciate how much of your social interaction comes from work until you are no longer working. I can go days without speaking to another human being in person, other than my husband, now that I am unemployed. Being chronically ill makes leaving the house, even for simple things, difficult. It also dramatically decreases your social life. When you remove the workplace, you are left with very little. Even if you aren’t friends with your colleagues they still provide you with social interaction, and as human beings this is vital to our well-being.
When you lose your job, or ability to work, your relationships with even close colleagues change, or fizzle out. The Christmas parties, retirement do’s or Friday drinks are suddenly gone. Even if you complained about having to attend them, they are missed when they’re gone. Being chronically ill is very isolating and being unemployed only adds to that isolation. Your once busy days become frighteningly lonely and you long for the mundane routine that a job brings.
I hope this article has given you an insight into what it’s like to be forced to give up work for health reasons. It isn’t something I ever considered until it happened to me. I hope this reminds us all to count our blessings, because your bad day at work might be someone else’s dream.
If you’re the person sat at home, wishing you could be at work then I want to remind you that your employment status does not define you. Your health may take your job from you, and even some dreams, but it can never take away your self-worth and your hope. You are so much more than your illness, you matter, and you make a difference in this world just by being present in it. I lost one dream, but I’ll never stop dreaming new dreams.