Chronically Ill Kat

I spent this morning talking through my finances with my partner. And it’s not pretty. Having a chronic illness is incredibly expensive – and having a chronic illness that stops you from being able to work doesn’t really help matters. Whilst there are some available safety nets to help those who are unable to work, it is incredibly easy to fall through these nets which, in many cases, don’t provide as much support as we assume. I have personally fallen through the nets and I am struggling with money.

This is something I am ashamed to admit and is something that I find hard to talk about. There is a lot of guilt and shame associated with money for a lot of us. But I do feel it is important to explore the financial impacts of chronic illness, particularly during the festive season, where we want to give gifts, but often cannot afford the things we want to give.

My personal situation

I am unable to work because of my illness. I spend most of the week with migraines and have very little energy. What energy I do have is very unreliable. When I tried to work a few years ago, my health took a very sharp decline, and it has still not recovered to where it was pre-work. I am also unable to apply for benefits because, sadly, I am a non-European living in Europe, and Brexit has made my position here very unstable.

That said, there is no guarantee I would get benefits, even so. Many people with CFS/ME and POTS are disbelieved due to the fact they have an ‘invisible illness’ – and given how fabulous I look some days, who can blame them! Even if I did get benefits, in the Netherlands that is 70% of minumum wage which, whilst significantly more than I currently have, is still quite minimal.

All this means that I have not been able to stop living off of my parents’ money – at 25 – and, let’s be honest, I am so lucky that I have them to fall back on.  

Chronic illness is expensive

Aside from the fact I have no income of my own, having a chronic illness comes with lots of extra expenses. In the Netherlands, I have to pay for more expensive health insurance every month, to cover at least some of the treatment I need. I regularly see both the physiotherapist and the osteopath in order to be able to function. These expenses are not fully covered by my insurance, but they are at least partially. To have everything covered by health insurance, I have to pay a monthly premium, and on top of that I have to pay my own risk, a set sum you have to pay before the insurance will cover you.

Sadly, a lot of my medications and supplements are not covered by insurance. Many of them, however, noticeably improve my symptoms – so I pay for them myself – and supplements, particularly niche ones, are not cheap! For one of these alone, I pay 65 euros every two months and, in total, I take 12-14 tablets a day – two of which are covered by insurance. So it adds up very quickly.

There are also more substantial costs, such as the wheelchair I recently bought, the compression stockings that I need to buy annually (80 euros per pair), plane tickets to visit my family because I am too sick to take the cheaper but far longer bus ride. In an ideal world, there are all sorts of things I could buy, that would make my life so much more manageable, but that are way out of my budget: a car, a scootmobile or automatic wheelchair, a cooking stool… – all these expenses are way outside my budget, so are simply not possible.

And that is not to mention the small and continuous cost of things like painkillers, healthy food, heat patches, public transport because I can’t cycle, special dietary food, rehydration salts etc. Each of these, individually, really affect my quality of life and, when needed regularly, they quickly mount up. Take heat patches for instance: these cost 3 euros per patch and, ideally, I would use them every day – as they make a huge difference to my pain, but that then becomes another substantial monthly cost. There are all sorts of things out there that are aimed at reducing chronic illness symptoms, and when you have the money to try them out and find out which work for you, it can really make a difference. However, this relies on having money in the first place – and many people in the chronic illness community simply do not.

So you can see, there are so many extra costs that come purely from having a chronic illness and needing to actively manage your health. Chronic illness is expensive. When my partner and I added it up, for purely medical things, not including the cost of health insurance, groceries, public transport or one-off purchases like my wheelchair, I already pay something like 250 euros more a month than he does, on medication and treatments. And this is without half of the things I need, or that might help in some way. This is a substantial amount, especially for someone who does not have the capacity to earn.  

I am always a little afraid that people will see me as whiney or attention-seeking when I talk about issues like this, but this is really not about sympathy. It is simply my reality and, just as I talk about my illness itself, I feel it is important to share the issues around my lived experience as they reflect issues faced by many others in the chronic illness community – through no fault of their own.

Money Anxiety

Money anxiety is a huge part of my life, and of many people like me. This means always being alert to what I am spending: weighing up whether I can afford an avocado; or deciding how bad my pain needs to be before I can use a more expensive form of pain relief, like my heat patches. It also means panicking whenever I am hit with expensive or unexpected bills, like taxes, or repairs for things in my house – in case this is the thing that puts my bank account into the red.

Again, I just want to acknowledge that lots of other people have these worries, for other reasons – especially following the pandemic, and I know I am very lucky that I can always ask my parents for support if I need to. They always do what they can – and they invariably find a way to help. But this doesn’t take away from the fact that money is always on my mind, and that is exhausting and, quite frankly, depressing, when you have the double whammy of living with a chronic illness.

Who’s responsibility?

What all of this means is that quite a hefty financial burden falls onto my parents and my partner, who are all doing their absolute best for me. But when having the conversation with my friend about money the other week they questioned “why should your family be the only people to support you?” This simple questioned opened up a long discussion about money, a summary of which I will now try to relay to you.

There is an assumption that your close family are the ones to cover the care and the financial costs of your illness. And I already feel a lot of guilt about how much I take from my family financially. But many people are moving away from the idea that only your close family should care for you. In my world at least, it is fairly normal to offer to cook for someone when they are too ill to manage, or to drop by with a homemade cake when someone is sad, and to help do the dishes when you are at someone else’s house. All these things count as community care in my eyes and seem perfectly normal and natural.

Yet somehow this idea doesn’t quite extend to money. Many of us – myself very much included – struggle to talk about money, offer it, or accept it. What if I dropped round with the money for a cake, or a few euros to treat you to a takeout, or paid someone else to do your washing up? Suddenly that doesn’t feel okay!

There is so much shame around not having enough money because it is so often equated with laziness and an unwillingness to work. Not having enough money of your own feels like a personal failing. And accepting financial help feels like accepting charity in a way that accepting someone washing my dishes does not. I clam up and feel totally guilt-ridden even if someone just offers to buy me dinner. It feels wrong to spend money that someone else has worked for, when I can never reciprocate. Yet my friends know I can’t earn it – and friendship doesn’t (or shouldn’t) work like that.  

However what I had not fully realised, until the conversation with my friend, is that money is entirely relative. Whilst I was panicking about finding 20 euros for some new tablets, they reminded me that, for many people, spending that sort of some is simply not an issue. And, on reflection, I suppose that, if you have savings and you earn a good, regular salary, spending 20 euros is not a consideration. Yet, for me, it is a fairly big expense and has to be thought about.

Much of my guilt, when people insist on buying me coffee or dinner, comes from the fact that I judge their expenditure from my the perspective of my own income. Yet I would love to buy people coffee all the time – I just can’t. So why not let them have the pleasure of treating me, if they can quite comfortably afford it?

And that then begs the case: if there are lots of people who can afford to spare small amounts of money, which would add up to a fair amount, why does the burden of my finances only fall to such a small number of people? Why do our ideas of caring for others not include financial care – when, arguably for many people, financial support would solve some or many of their problems.

Certainly for me – except for receiving a magic cure – money would solve the majority of my concrete problems. Money isn’t everything, for sure – but when you have a lack of it, it has a huge influence on your life.

My friends are amazing

I seem to say this every week but: my friends are amazing! And when it comes to finances, many of them are aware of my financial situation and offer to help pay for things regularly. Often, when we meet for coffee, they will pay. Other friends (and some readers of my blog) donate sums of money to me through my ko-fi. I even had one friend who sent me a monthly sum for a while, trying to practise the idea of mutual aid with money – just because he could, and because he is lovely.

But these things are hard to accept because I feel I can never pay them back. If my illness is chronic there is no reason to assume I will ever be well enough to work a regular job. And this makes me worry will I forever be in debt to my friends? Will I forever have to rely on their charity to have something nice? Will my friends have to fly me out to visit, whenever we want to hang out? It worries me that, when they want to do nice things, I will gradually stop being invited, because people know I cannot afford it and I can never give back.

I love that my friends do these things for me, but in a world where money is made into such an individual thing it is hard to always be accepting without being able to give. And it sucks that I don’t really have the power or capacity to change that, with my health as it currently is. I am doing everything I can just to get by.

Let’s talk about it

The thing that makes this so much more difficult is that, particularly as an English person, it is ‘not the done thing’ to talk about money – and more specifically, about not having enough. I am genuinely terrified about posting this blog because I am really not sure what people will think.

If we were more open and honest about money, it would be a lot easier to share, give and accept it. We would have more understanding about what people need, lack or have in excess, and we could then more creatively help those who, through no fault of their own, do not have enough money – just as we might with any other random act of kindness or friendship.

If money were a topic that was no longer so shrouded in mystery and so difficult to broach, then we would no longer feel ashamed about lacking it – after all, most people have so many other things to share with the world.

‘Certainly there are things in life that money can’t buy, but it’s very funny – Did you ever try buying them without money?’ Ogden Nash