Hey Crohnies and Lucky Coiners,
Recently I’ve overheard and witnessed a lot of people weighing in and debating their opinion of benefits. Be it for people who have lived in this country their whole lives, people who haven’t, people who are sick, people who are well, people employed and people unemployed and I thought I’d put in my point of view specifically about people who have an illness or disability that requires a need for benefits be in DLA/PIP, Carers Allowance or ESA.
I have to say firstly that I hate the word disabled. Yes I might struggle to do things completely abled bodied people do but I don’t feel that it leaves me at a disadvantage over them. I just can’t think of another word that gets across what I mean when I talk about people like me. It could take me longer to walk the same difference or to get somewhere but I will always appreciate the effort it took to get there and also appreciate someone else in my position getting there too.
There is a great feeling of being included and part of a club (albeit not the nicest one but I digress) with other people like myself be it with a visible imparement or others like me who have an “invisible illness” (believe me it’s definitely not invisible if I show you my bag and stoma under my high waisted jeans). We like to build each other up, even in the tiniest of ways, if you managed to walk up some stairs for the first time in months or if you managed to keep food down instead of being sick… It might not be a race or a huge award but with any kind of illness or condition limiting your life it’s a marathon, definitely not a sprint and you need to keep some of your spoons spare in case you need them later. (To get what I’m talking about by spoons you might like to read this article by the blog But You Don’t Look Sick, The Spoon Theory)
Yes, people like me can have “good”days and we may even look perfectly healthy to you but if you look beneath the make up and nice clothes or hair that distract you from the dark circles under our eyes that show you how we’ve been up all night in pain or the long sleeved shirts to hide the bruising from yet more injections or blood tests or even the distraction techniques I use on a daily basis to hide from people when I am potentially leaking and checking my bag so I don’t end up covered in my own filth by using some hand gestures or pointing something out in the opposite direction.
You might think that only the people who are visibly disabled and in residential care etc should be required to apply for benefits, I bet even some of my family and friends agree with this statement too but I am now willing to tell you all that I claim DLA it is basically Disability Living Allowance and I have been awarded this since I was 17 (4 years after I was diagnosed due to being refused multiple claims). I also am receiving ESA which is Employment Support Allowance and is extra money I’ve recieved for the past year and a bit due to being too unwell to work.
I recently however, found out that my ESA was being lowered to £1.97 every fortnight. Yup, less than £1 per week. This is because I now receive a student loan that pays for my course fees (thank you Crohn’s for making me resist a year at college and now start a 4 year course that means SAAS can’t find this year) at uni and little else. I was until that point getting £240 every 2 weeks. This money was invaluable to me as although you might think I look well, I am actually not. I spend a fortune each month on petrol or public transport (at least £60-£80 per week) to try and get to places like uni and to the hospital. I also have to buy a lot of clothing because in case you didn’t realise my poo is very acidic and when I leak it dyed my jeans a funny colour and I’m having to replace a pair after only 1 or two leaks due to them being ruined and stained like they would if jeans touched bleach. Even if I buy from Primark my jeans are a minimum of £8 and those aren’t even the high waisted ones… Buying 1 or 2 pairs a week is also a decent chunk of money. Then let’s throw in some stays in hospital, I can’t handle the food given out while in hospital (a curry for dinner when you have IBD is a no go, or some fibre filled sandwiches or pasta that can cause issues with blockages behind my stoma) mean I either need someone to bring me food or get something delivered to the wards. There’s even more money gone.
As you can see from this fraction of information I’ve given that it’s not cheap being disabled, in fact it’s pretty bloody expensive and that’s not including the usual things I need to account for like certain foods I can or can’t tolerate on a daily basis which can mean needing to abandon a pre prepared dinner at the last minute for something that won’t cause me to be sick and spending even more money. It’s also not taking into consideration all the other expenses others like me can have which can vary hugely.
It’s not quite as simple as telling unto get jobs either, I can’t guarantee an employer that I’ll be in great health, able to work 9-5 every weekday for the next week let alone forever and that is another reason why we need benefits for people in this situation. I am very lucky that I have managed to create a company that works around me and when I can work, thanks to being online it means I can work at night too which is often when I finally start to feel a bit better or can’t sleep.
Others aren’t as lucky as me and are likely to spend their lives on benefits due to the nature of their illness which is a harsh truth. I know I might rely on benefits for a good portion of my life, especially with the unpredictable nature of Crohn’s so I think it is crucial that these people get the funding they need for at least a basic standard of living because until you’re disabled yourself, you never know how much every aspect of your life is affected and how much this money is a lifeline for many people. I for one would not be able to attend uni or have this business had I not the help from the government and in all honesty I believe that without this lifeline others in this position and worse could be led to take drastic action on their lives due to being a financial burden on their families or even made homeless.
I thought that you would find this interesting as the view point of a disabled person living on benefits and justifying our country and government in their decision to have these benefits available. Plus you never know, in the future you might join our “club” and need these benefits yourself.