In the news today, Macmillan Cancer Support reports that most people cannot financially afford to have cancer.
They estimate that the illness costs around £760 per month, leaving the average family with a shortfall of £270 per month, due to increased living costs, such as extra travel, support and loss of earnings.
I could be wrong, but I think this pretty much applies to MS too – definitely so in my case.
Even before diagnosis, I had to drastically cut my working hours and now, although my health has stabilised somewhat, MS still throws plenty of curveballs my way, so much so that I cannot ever see a time I will be working 35 hours a week.
When I was really ill, I relied heavily on expensive ready-meals and takeaways instead of my usual prepared-from-scratch meals. I also took a lot of taxis to hospital and back, unable to cope with the stress of driving, parking, fighting with the ticket machine (the one at my hospital is sadistic) and stumbling to my appointments. I would feel tremendously guilty at not being able to do much with The Teenager so I would entice him with an extra tenner here and there to enjoy himself with his friends. It all added up.
So not only do we have to cope with the devastating emotional loss and bereavement any illness brings, we also face the very real fear of losing our homes, our livelihoods and the ability to look after our children in the way we would wish.
As a single, divorced parent (small violin please), I have no partner to fall back on. I have to earn a wage. That responsibility is frightening and keeps me up at night. I joke that most of my furniture is from Gumtree, but I’m not far wrong. I rummage through charity shop racks, putting aside the money I save so that The Teenager can have a few nice brand-new t-shirts. The cat went on strike when I swapped her food to supermarket own-brand but she learned to love the cheap biscuits, although she brings home more decapitated mice nowadays.
What is the solution? Is there one? If we give up work, we’re scroungers. If we stay in work, many of us are made to feel unwelcome and a ‘burden’, needing too many adjustments.
One thing I must mention though, is that the National Health Service remains free in the UK. I can’t imagine how much I have cost the NHS over the last four years. How would I have afforded the cutting-edge disease modifying drug I had access to, if I was living elsewhere?
But what does the future hold? Will we still have an NHS? What will happen when I’m too old to work but too young to retire? One thing is clear, illness is expensive. Can you afford it?
I am very lucky to have a supportive husband so I only have to work part time, but I still make concessions I work weekends so we have no childcare costs ( my son is 10) and therefore we have very little time together as a family apart from when one of us is on holiday. Also it is great that I’m not bad enough to qualify for any help like a bus pass but boy when I am tired or it is hot or cold a bus pass would stop me worrying about the amount I spend on short trips. In terms of my son I do worry that he has to cope with far more than other children in his class
I worry as well – my son has had his whole secondary school life with MS 🙁 But I really do think it can make them stronger kids!
So very true! I work full time , it’s a struggle but my employers have made adjustments and it’s just about do-able however the management changes over the years and people leave and now I find there are just people who don’t understand (or don’t want to) and I seem to be a number an inconvenience. I don’t know how long this will last but my mortgage kind of relies on it!
Really sorry to hear that, but sadly all too common 🙁 Anyone would think MS was our fault!
Excellent post, agree wholeheartedly. Trouble is, until it happens to you, it really doesn’t register just how much you cannot afford to be ill. As you say, we are branded scroungers but what on earth is their solution eh? People just don’t want to admit to themselves or anybody else that they would be facing the same financial issues upon diagnosis of something.
I must have missed my Neuro handing out a massive sackful of money on the day I was diagnosed!!!
You’re absolutely right – most people have no idea. I love the image of my neuro giving me a sack of money, lol.
Totally agree. My Dad died of cancer 9 months before I was diagnosed. It wasn’t a long drawn out illness but I worried for my Mum’s financial situation and as soon as I was diagnosed the idea of being financially dependent on someone in the future was devastating. I had my own mortgage when I was diagnosed and working 40 hours a week and the idea that I wasn’t going to be able to do that let alone progress in my career was pretty awful. I felt my career had only just begun, I’m 28, but I’m starting to get my head around my new priorities which is not my career or earning loads but my health first and foremost. I’ve been struggling with this a lot. There’s lots of rambling about this on my blog! Anyway poignant post. It really bugged me when I was diagnosed that noone around me realised this!
Hello – I’m really so sorry to hear this, it must be incredibly difficult for you.
I hope things are a little better now? I find it strange that I will never again work full time 🙁 But you’re right when you say your health is first and foremost.