Artie is 29 years old and living in a remote area outside of Brighton. They live with their mum and grandparents. We recently spoke to them about the effects the cost-of-living crisis is having on them.
“All of my family are sick and disabled in some capacity. My rare disease is a type of vasculitis called Takayasu’s arteritis, it affects large vessels, so mostly arteries.”
“I've been on three different immunosuppressive medications since June 2020 to help control my symptoms and I have other health conditions as well, such as Crohn’s Disease. A lot of it is pain-related. It's a lot of trying to keep on top of pain management. I’ve now gone through all the usual options for pain meds attempting to manage the pain I'm in.”
Keeping up with increased costs for them is a battle, they have low income due to their conditions and have to weigh up where best to spend their money. Little costs add up. “It costs more to buy things like hand sanitiser and masks.” A constant supply is needed for them due to their immunosuppressive medications.
A larger monthly expenditure is now needed to help manage their pain. “The most recent change is that I have started going to a private medical cannabis clinic because the NHS treatment is no longer helping; unless I want to go private for something a little bit more intense, and I don't really like infusions, I'd rather leave that a bit further down the line. The clinic is really expensive. It's about £125 for a small bottle of the oil, which can last a month or so. On top of this are the extra costs of actually seeing professional people for example I see a chiropractor, and I see a massage therapist as well, who ideally, I would like to see more frequently but unfortunately I can’t afford to.”
Artie feels guilty that the added costs of their specialized diet, due to Crohn’s Disease, are putting a strain on family finances.
“I overheard conversations about how much I was eating and how expensive my food was, but hearing somebody else talking about it definitely made it worse.”
Artie is young and trying hard to maintain a social life, which helps with their mental health. However, spontaneity is difficult. A lot of coordination and organisation is needed to plan a social catch-up for them, from the transport to taking their own specialised food. Although they can drive, they no longer run their own vehicle due to the costs and infrequency they are well enough to drive. Today they do car share with their mum or try to get lifts from family where possible. They use public transport as a last resort, even then, they still need to be dropped off at the bus stop because of the distance.
“I have been trying to put more of a focus on in-person social stuff since about September 2022, because being isolated and vulnerable during the pandemic with my conditions has been really isolating, and very depressing. I joined a group and have friends that I plan to see. There are a few more low-cost events going on now in Brighton which is good, but the trains cost so much money. It is about £7 or £8 a return. The bus is cheaper at £2 each way but it’s an hour’s journey each way by bus, sometimes I've had to travel for around three hours or more just to get other buses to places, but it works out a lot cheaper than if I got the trains. It does influence my health in being able to actually enjoy the things I'm going out to do.”
Due to their health issues work can be difficult and their income is limited. Currently, they are trying to build their own business to work around their health needs, whilst also working for a friend to bring in some income.
“You don’t really get taught anything about business at school or work options available outside of ‘normal’ working positions so you kind of have no idea what you're doing when starting a business. At the moment, I work part-time, approximately 8 hours a week, which is very low energy, but quite nice pay.”
Artie spoke about concerns about knowing where to go for help. “I tend to find anyway, that if you don't already know what you want to ask about, they can't tell you anything anyway. You can't really go to Citizen’s advice, hospitals, people etc. and ask or tell them you need help to deal with the financial stuff and cost of living, because they'll only give you what's kind of very well known. We as a family don’t tend to qualify for most help. I don't really qualify for support or they're not really suitable for me. Most of my support usually comes from community-based things that aren't necessarily like charities. I'm in a weekly video call support group with other chronically ill people my age, which has been really helpful.”
The family had no working septic tank or cesspit due to the costs of the repairs needed and a battle with the insurance company to pay for the repair. The boiler also broke down, so the family were left without heat or hot water for over a year. This increased electricity bills as the family were forced to use heated blankets and electric heaters. “As soon as one's been fixed, another one happens. It's always like every time we've saved any money, it's immediately gone. You need working toilets, you need hygienic ways of going to the bathroom, we're a family of disabled people.”
The mental health of the family has been affected by the extra worry and stress of the cost-of-living crisis. Artie is worried not only for them but for the wellbeing of all their family. “When it comes to mental health, it is just constant hyper-vigilance, it is really exhausting. My mum is the main person who takes the brunt of it all because it's usually her name on everything. She's the one who has the most understanding of how these things work now and it has definitely affected her mental health quite a lot and that's very concerning for me not just because she's my mum and my carer but if we were in a slightly worse position, it's worrying what might or could have happened.”
The worry about the future is constantly on their mind and they struggle to find the right support. The confusion of where to turn and who can help is a huge issue. There is a need for support, and it’s not being met. Ultimately the cost-of-living crisis is exacerbating their fears and mental health, the worry over what the next few years will bring is all-encompassing for Artie and her family.
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Takayasu Arteritis (TA)
Takayasu Arteritis (TA) is an inflammatory disease of the large arteries. TA particularly affects the aorta (the main artery taking blood from the heart to the rest of the body), and the pulmonary artery (which sends blood to the lungs). The major arteries that arise from the aorta may also be affected. These include the subclavian arteries that supply the arms, renal arteries to the kidneys, coronary arteries in the heart and carotid arteries in the head and brain.
To learn more about Takayasu Arteritis, click here.
Source: https://vasculitis.org.uk