The hidden price of chronic health conditions: ‘My IBD costs me £5,000 a year’

Living with a chronic illness brings a huge financial cost, as well as a physical one (Picture: Getty/Metro)

Prajakta Jyoti was about to sit her mock GCSEs in 2021 when she was hit by an agonising pelvic pain that saw her rushed to A&E three times.

‘I couldn’t walk, I couldn’t eat, I could barely talk. My mum was more worried than me,’ 20-year-old Prajakta, from Milton Keynes, remembers.

On her third visit, she was rushed into surgery for suspected appendicitis. It emerged that a cyst had burst in her abdomen, and the then-teenager remained in hospital for ten days.

Prajakta, has since spent years being misdiagnosed, but when doctors referred her for a psych evaluation, her mother Jyoti decided to take matters into her own hands.

‘We suspected endometriosis, but doctors insisted I was too young. To be told it could be anxiety was really disheartening because mentally, I’m very strong,’ Prajakta tells Metro.

Using up all her savings, Jyoti flew them both to India to see a private specialist in Hyderabad.

‘I was seen in the first 12 hours that we got there and diagnosed with endometriosis. It is all over my abdomen; my bladder, my bowels, and on my upper abdominal wall. The pain literally never stops.’

After being told she would need to wait two years for surgery, Jyoti cleaned out her bank account and paid for a private operation at a cost of £10,000 – representing only around a third of what they have spent on scans, private appointments, international travel and other associated costs.

Prajakta’s mum used all her savings to get a private diagnosis in India (Picture: Supplied)

‘Altogether we’ve spent around £30,000. And my mum has had to cut down on her work to take me to and from the hospital once or twice a week.

‘I am now facing diagnoses of endometriosis, adenomyosis, POTS and Chohn’s disease. It is 24/7. I am on opioids to manage the pain that radiates into my back and legs. When it’s really bad, I can barely walk. I stay in bed quite a lot.’

Prajakta’s abdomen is covered in scars and skin burns from the hot water bottles she uses to ease the pain. But the invisible price of ill health is hard to bear too.

‘People simply don’t understand how much it can cost to live with chronic illness. I can’t go on public transport because it would be too dangerous as I am immunocompromised.

‘Hospital parking is expensive, I have medication to pay for, therapeutic items like TENS machines, heating pads and hot water bottles.

‘People simply don’t understand how much it can cost to live with chronic illness,’ says Prajakta (Picture: Supplied)

‘My mum loses around £20,000 a year on missed work as she has to take me to so many appointments and look after me when I’m in too much pain. I’m down on both sides. If I had better health, then I’d be in a better financial situation. And if I had better finances, I could be in better health.’

Milla Lewis, 24, tells Metro that has seen his food shop double in price – from from £40 to £80 a week – after he went to bed two years ago and woke up the next day with a chronic and incurable long term illness.   

‘One day I went to the toilet 15 times. I just assumed it was something I ate, but after two weeks when the symptoms hadn’t gone, and then I started bleeding a lot, I visited my GP,’ Milla, from Doncaster, says.

Milla was diagnosed with IBD and has seen his food shop double in price (Picture: Supplied)

‘I had a colonoscopy and spent months convinced I had cancer. It was one of the worst states I’d ever been in physically and mentally. I had anaemia because I was losing so much blood, and when I look back at photos of myself, I can see how skinny I was and how I looked like a ghost. I was exhausted all the time and just battling through it.’

After three months he was diagnosed with Inflammatory Bowel Disease (IBD) which was initially a relief, until Milla realised it was a condition that he would have to manage for the rest of his life.

He now feels a little better, thanks to medication and lifestyle changes, which come with a hefty price tag.  

‘Before, I would eat pizza, chips, chicken nuggets. Anything that came frozen in a bag that you could chuck in an air fryer.  

Milla had to give his diet an overhaul to help manage his condition (Picture: Shutterstock / Manu Padilla)

‘Now I eat whole foods. I get my meat from a proper butcher and go for fresh salmon, steak, chicken, and vegetables. I know I have to keep my gut happy to prevent flare ups, but also to support my emotional wellbeing. I am really careful about what I eat.

‘Most people can live how they want, but I have to do all these things to just get to a base level of normal. That includes going to the gym three times a week and eating well.’

Milla’s illness meant that he also had to step away from the business he spent three years building with his dad – however, he found unexpected success posting online about living with IBD.

Now working as a content creator, he can tailor his routine to when he feels well, and he is making enough money to pay the bills. He can’t stay up late or go out drinking any more, but Milla is happy to be careful with himself so as to remain well.  

‘I want people to understand that chronically ill people have to be careful with themselves. We’re not trying to be extra. It is just the difference between being able to function, and not,’ he explains.

‘I am feeling good now and optimistic about the future. A few months ago, it wasn’t all sunshines and rainbows. But I have been really strict with myself and what did feel devastating, like the end of the world, now feels much better.’

Raphaella spent a year unable to work as she suffered with ongoing pain (Picture: Supplied)

Raphaella Stewart, 28, also faced years of waiting and misdiagnoses after experiencing abdominal pain from the age of 18.

Following four years of repeated tests and doctors appointments, her grandmother paid for her to go private, and she was told she had ‘very severe and deep infiltrating endometriosis’ that would require multidisciplinary surgery with an endometriosis specialist, a urologist and a colorectal surgeon.

The NHS said that if she wanted to have children she would need to freeze her eggs – at a cost of £16,000 – before they could go ahead with the surgery.

Raphaella spent a year unable to work as she suffered with ongoing pain, alongside hormonal effects of the chemically induced menopause, anxiety and depression.

When she eventually could go back to work, she took on a part time role in a charity shop, where she found the manager unsympathetic.

‘There was one shift where I was in a lot of pain so I asked if I could stay behind the till and not do anything too physical. I could see she was annoyed. There were 20 huge bags that came in and she asked me to carry them all to the van down the street.

Raphaella estimates she spends between £400 and £500 extra a month on managing her conditions (Picture: Supplied)

‘I didn’t feel I could say “no” and I did it, but ended up in so much pain that one of the volunteers told my manager to send me home. The manager told me I shouldn’t have applied for a job in retail.

‘It was humiliating and made me feel useless,’ Raphaella remembers.

Since leaving that role, Raphaella has tried many others which she has had to leave due to illness, and now works in customer service, which is entirely home-based.

‘It can be quite embarrassing going into the office and dealing with my health issues. I have to constantly go to the loo, and spend the day masking my pain. Working from home means I can stay comfortable, be in my tracksuit, have a hot water bottle and don’t have to hide the pain from anyone.’  

Her diagnosis has hindered her career opportunities and Raphaella has estimated she spends between £400 and £500 extra a month on managing her conditions – which adds up to around £6,000 a year.

When she does travel, she needs to pay for taxis, because she can’t walk far or take the bus. Her money is also spent on holistic therapies, like acupuncture, or CBD balms, which can be costly.

‘I can only buy foods that don’t cause flare ups. And I have to have deliveries, which are more expensive, because I can’t just nip to the supermarket unless I have someone to carry my shopping and drive me there and back,’ says Raphaella.

‘I want people to understand how expensive it can be to live with a chronic illness. Spending money causes me stress and guilt most days.

‘I suffer from anxiety anyway, but financial pressure can make it much worse.’  

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