So I’m sure you’ve all seen the comments by the UK Prime Minister recently about his goal to get disabled people back to work. I’ve read a lot of the articles and comments people have made about this. So I thought I would share my thoughts and experiences as a disabled person who works full time.
In a recent rheumatology appointment I was asked ‘if’ I work. Now this is the first time it’s ever been worded like that. Usually it’s ‘what do you do’. But the way the question was asked in this instance, there was an assumption made I think that I didn’t work. Now you may say this is because I had just spent 15 minutes relaying my medical history of chronic pain and the new level of pain that I now live with. And had also mentioned that I do struggle with going out at the moment due to a flare up of POTS so my heart isn’t stable enough for me to walk very far at the moment. But I hadn’t said anything about not working or what I did with my time in the day.
I often say it is a privilege to not only be able to work, but also be able to work full time. People often get confused about this as it’s something often taken for granted. The ‘norm’ seems to be you go to school, you then either go to uni, do an apprenticeship or start working in whatever your chosen career is. Some lucky people get it right the first time and develop and progress in their career to their chosen level, then retire and live happily ever after. Sounds simple yeah?
Well for disabled people this is not often the case. Depending on when your disability starts affecting you this can cause delays with school, A levels, University or when you’ve began your working life. For me I have been disabled for most of my life, and lived in chronic pain for over 30 years. Pain is my normal, and therefore I have learnt to adapt. This doesn’t mean I don’t feel the pain anymore, I’ve just learned to live with it as it’s always there and if I didn’t do this then I wouldn’t really do anything.
So then you may wonder how do I manage to work full time while dealing with a disability and chronic illnesses? I think the truthful answer is I don’t really know, I’ve just never thought to not work. What I do know is that my brain is very active and I would get very bored if I didn’t work. I have friends who say similar who unfortunately due to their health and needing emergency medical attention so often are just not able to work. I don’t mean just taking time off, I mean repeated admittance to hospital for days or weeks on end that would mean working is just not plausible. This is why I always say I am privileged to be able to work full time and it is not something I take for granted. The other obvious answer is the money, I like being able to contribute to the household income which means we can have certain luxuries that we wouldn’t have if there was only one income.
It is a huge struggle, I will not lie. While I do go into the office a few times a month I try and spread this out to avoid flare ups and exhausting myself too much. But this isn’t always avoidable which then makes me worse. This is another part that people don’t see. Similar to neurodivergent people, those with disabilities or chronic illnesses will often mask in order to fit in or seem ‘normal’, usually to their own detriment. We will then pay for this by needing to rest in the evenings and weekends when we could be enjoying time with friends.
Being disabled or having a chronic illness is a constant balancing act. Trying to make sure you’re doing enough so you feel you are living and have a purpose, but also not doing too much that you overdo it and then crash. Just the planning ahead can be exhausting as there’s always so much to consider for even the simplest of tasks or outings.
I write this after two full days in the office of meetings, presentations, discussions, moving around different meeting rooms and working at a desk in a busy and noisy office. To say I am exhausted would be an understatement. Just typing this is causing me pain but I want to get this down while it is fresh in my brain. I’m now borrowing spoons from next week I think (if you don’t know spoon theory please search it but I will cover it in another blog). The recovery from this week in the office will take over a week, this is another part that people don’t see. Whilst I enjoy work and choose to work full time as I do enjoy working and contributing and hopefully making a difference in my own way, my health would possibly be better if I didn’t work, could rest more and use my energy more wisely.
I think for some as well working is an escape from their disability. When working they are just another employee, rather than someone disabled. You can hide amongst a sea of other workers, feel included, like you belong and it’s also a reminder that we are more than our disability. This is why I am often reluctant to talk in too much depth about my disabilities. Having complex medical issues I find whenever I talk about them I either get met with the sympathy, or just shock as they can’t comprehend how someone is still able to function with all that going on.
But there is no norm really as to how your life should pan out, or even how your career should. As long as we are happy, not causing ourselves injury (or not too much anyway!), and are doing what we want to do then there is no reason a disabled person can or cannot work to manage their health. What we want more than anything is to be treated equitably and with understanding. You may think someone who has a reasonable adjustment is getting special treatment, but they aren’t, it’s just an adjustment to enable them to be able to do their job/task in a way that does not cause them any harm or distress. And most disabled people would much rather not need to have that reasonable adjustment, or not have to think ahead before going out for lunch, or to the office. Or planning an evening out the same week as an office day, I’ve paid the price for this on more than one occasion.
I do think working life in the UK needs to change, it needs to be more flexible for everyone, not just disabled people. We all have a part to play and if we were more flexible with how things are done and more open to change and trying different things I think a lot more people could work if that’s what their choice is. The rigid 9-5 office working needs to change, it would enable parents to be more flexible whilst managing childcare, the commute would not be so bad if we weren’t all travelling at the same time and it would mean disabled people could maybe work when it suits them best. Many with a chronic illness find morning the worst as their body needs time to adjust or for medications to kick in.
You may or may not agree with what I have said but I just wanted to share a snippet of my experience of working full time with more than one disability and more than one chronic illness. It’s not easy for anyone to work full time, and manage a family and try and have a social life and we’re all just doing our best. Please just recognise that disabled people aren’t lazy, we’re just trying to survive in a world that is often against us.
Fighting Fit 