Chronic Illness and The Cost Of Living Crisis

Earlier this year, I was woken by a call from the BBC radio asking if I would like to join them live on the radio for a debate with two politicians. The discussion was on the subject of the cost of living crisis and the huge effect it’s having on people living with chronic illness.

I was fighting off a nasty bug at the time but the excitement of taking part in this discussion was enough to get me out of bed. Unfortunately, it did not pan out as I had hoped. I was only given ten minutes to prepare, which was a real challenge on a brain fog filled morning. However, I did manage to put together a few points that I believed were coherent enough to start off an interesting discussion.

After fighting off the sniffles to blurt this out, I was put on mute while the two politicians continued to attack one another without involving me. I was left talking to a brick wall as they both went on to miss the point and ignore most of the few words they actually heard me utter (what a shock!)

So I thought I’d come on here and bring up the points that I would have made if I was given the chance.

Heating issues

Temperature can have an enormous impact on how AS affects me. During the cold winter months, my pain and stiffness levels skyrocket. I find that warm weather is a whole lot easier on my body, but unfortunately I live in the UK where sunny days are few and far between!

As a result of the huge increases in energy prices, many of us with these kind of conditions are having to choose between between spending what money we have on either food or heating. It’s 2023 - a developed country like the UK should not be forcing it’s residents into choosing between being hungry or being in pain!

More support needs to be made available so people are able to keep their homes and bodies at a healthy temperature.

Benefits not paying out

Having a chronic illness not only makes life more expensive, but it also makes it a whole lot harder to work.

I was fired from my job because of my diagnosis and I have had real issues finding suitable employment since. It’s been a struggle to find a role my body is capable of doing and I feel that potential employers have been put off by my condition (although they would never admit to this.)

Furthermore, many of us fortunate enough to find themselves employed are only able to work part time or in lower paying jobs. With the prices of everything going up, these roles are becoming more unsustainable and people are struggling to get by financially.

This has driven many people to apply for benefits, which the government seems to be cutting and getting stricter about by the day.

It seems to be even harder for those of us in our younger years to apply for. Whether that is because they don’t want to pay us for a longer amount of time or believe that young people can’t be sick, I’m not sure. But, as many other young people I have spoken to, I have been deemed not disabled enough to help and rejected for any disability allowance.

We need to make financial support more accessible for those with chronic illness and create suitable roles with sustainable salaries.

Blackouts

There has also been talk of potential power blackouts becoming more common. Depending on who you believe, this is allegedly a money saving tactic or shortages that have come about due to the conflict in Ukraine. I’m not sure how true this is or how likely this situation is to arise, but there are deeper problems than not being able to connect to the Wi-Fi for a few hours.

A large number of us with chronic health conditions rely on medication that needs to be maintained at a cold temperature. I personally would be in agony and probably unable to walk without my Enbrel which I keep in the fridge. If my injections were to rise to a temperature above 8°C then they would have to be thrown away as they would be unfit to use.

Regular power cuts would lead to a lot of medicine going to waste and a lot of people could be spending even more money on replacing these. But there is also the risk that if I was out of the house during the power cut, I would not know that my medication has become unsafe and could be putting my body at risk by using it.

A blackout like this not only causes our food to go bad, but it has the potential of making the medication that we rely on to become dangerous to ingest.

We need to ensure that this does not happen or that there are back up plans in place to protect our medication.

Lack of understanding

The comments made by the politicians (that I was unable to respond to) showed just how out of touch they are with people in our situation. Of course they gave me their apologies in an attempt to not appear to be uncompassionate robots to the audience. But as for everything else, they were utterly clueless.

One line that really struck me, was a response to my concerns about people being in extra pain as they can’t afford to put the heating on. They cluelessly told me "I hope you can go to speak to your GP about this."

I already know what my health conditions are, I do not need to waste a doctor’s time with an appointment to tell me that the cold can increase my pain and stiffness. The doctor sadly cannot give me a prescription for a home that’s warm enough to stop my joints flaring and causing intense pain.

The worst part about it all was that this comment was probably the most relevant reply to everything that I had said. They swiftly went on to discuss the war in Ukraine and blame each other’s parties for it.

A very important issue of course, but not one I was woken up at 7am in the morning to talk about with them.

Final thoughts

I think it is good that the BBC at least pretended to give a voice to chronically ill people about this issue. But it was done so poorly and is most certainly not enough.

Those in charge (of the UK at least) are completely out of touch. They have no idea about the struggles that chronically ill people go through every day and how little help is available to help us survive through this cost of living crisis.

Of course, the cost of living crisis we are in is awful for everyone involved. But those of us with chronic illnesses are being disproportionately affected. Things need to change and our voices need to be heard.

How has the cost of living crisis affected you? Let me know in the comments.