by Nia G.
Medically Reviewed by:
Debra Sullivan, Ph.D., MSN, R.N., CNE, COI
by Nia G.
Medically Reviewed by:
Debra Sullivan, Ph.D., MSN, R.N., CNE, COI
Living with a chronic condition can be expensive. We need to do a better job of providing resources and support to those who need it.
I’ve seen firsthand that there are many ways being chronically ill or disabled can make life more financially difficult and unstable.
A 2022 study highlighted that living with chronic conditions is connected to increasing debt. Furthermore, debt increased with the number of conditions participants live with. This study built on research from back in 2009, which called for greater action around the evaluation of the economic hardships associated with living with chronic conditions.
However, financial support for people living with chronic conditions and disabilities is still limited. People living with disabilities remain one of the groups in society at the highest risk of poverty.
This article will cover some of the factors that contribute to these financial challenges as well as some suggestions for where to find support.
The 2022 study emphasized that medical debt is a key reason for financial challenges for those living with chronic health conditions. When you live with a chronic condition, you may find yourself needing recurring medication, consultations, surgeries, medical procedures, second (or third or fourth) opinions, mobility aids, or medical devices. These medical costs add up.
Another 2018 study reviewed the average medical debt of families and households living in the United States based on the number of health conditions within that household. It found that the average medical debt for households with 1 to 3 chronic conditions was $1,267.06 and for households with more than 4 conditions, the average medical debt was $2,986.88.
With more medical expenses, chronically ill people often have less money to spend on other essentials such as electricity, heating, food, and more.
One of the main challenges is the inability to work or difficulty finding accessible work. Many people with chronic conditions have no choice but to work in order to pay the bills. However, the lack of accessible work means that it’s often hard for them to find a job.
Moreover, biases in hiring practices as well as the inability to provide accommodations are still too common in certain work environments.
Some people cannot work at all due to their symptoms and either rely on the support of loved ones or are forced to navigate lengthy application processes in order to get assistance. These factors make employment more difficult to find, and retain, for people with chronic conditions, and may result in reduced income.
There is a common misconception, or oversimplification, that because disability benefits exist in many countries, everyone living with a chronic illness or disability must be benefiting from them.
Unfortunately, this is often not the case. Many disability benefit programs involve lengthy and complex applications and a lack of support to help individuals accurately complete their claims forms. Disability benefit applications can be denied for an array of reasons including if the applicant’s disability isn’t considered “severe enough,” if the applicant doesn’t have sufficient medical evidence, or if the applicant is able to perform another sort of job.
For individuals who are still undiagnosed, it can be even more difficult to receive benefits, even when working isn’t possible.
According to the SSI Annual Statistic Report, in 2020, only 30.8% of applications for disability benefits were awarded.
Travel restrictions can also pose a financial burden for people with chronic conditions. Using public transportation sometimes isn’t an accessible option, especially for individuals with mobility challenges.
Some people with chronic conditions may need to rely on more expensive methods of transportation like taxi services in order to get around.
Sometimes taking public transportation requires paying extra for certain accommodations. Things that are necessary accessibility measures like travel assistants, technological assistance, and more, are often viewed as luxury features for those who don’t live with a chronic condition. People with chronic conditions may have to pay for more expensive seats or priority access out of necessity which can make travel much more costly.
Moreover, people with chronic conditions may also find themselves needing to take frequent trips to hospitals, doctor visits, and medical centers in order to access the medical care they need.
The unfortunate reality that many of us with chronic conditions face is that you often need to pay more to have your basic needs to be met. This includes needing to pay more for an accessible room in a hotel or for an accessible seat at a music concert.
I read an article by John Morris who is a wheelchair user. He shared screenshots of a hotel in Florida on his website showing that they were charging customers $102 more for an accessible version of the same room. According to the American Disability Association, this is actually illegal.
Unfortunately, the idea that accessibility is an inconvenient “add-on” rather than a human right that people with chronic conditions deserve is a big issue. They should not, in principle and by law, be charged more for their access needs in public spaces but they still often are.
Some added expenses of living with a chronic condition are less obvious. For example, people with chronic conditions who need to spend more time at home, due to their symptoms, may be faced with higher electricity or heating bills.
Due to factors like mobility issues, fatigue, or being immunocompromised, many people with chronic conditions may need to have their groceries delivered rather than going shopping in person. These delivery services can be a great option for people with chronic conditions, but they also cost more.
Many people living with chronic conditions need to follow specific diets or nutrition protocols.
However, the cost of these changes can be high. Plant-based, allergen-free, gluten-free, or dairy-free products that chronically ill individuals rely on, are often far more expensive than the standard product offerings.
A 2019 study found that gluten-free products cost, on average, 183% more than their counterparts.
While there are many ways that living with a chronic condition can be financially challenging, there are many services and options that can help. Here are some of the measures I would recommend if you’re trying to save money while navigating life with a chronic condition.
It isn’t fair that people with chronic conditions and disabilities are more likely to live in poverty. It isn’t fair that financial support is so often hard to access. It isn’t fair that the financial burden of having an illness or disability is still so vastly underestimated.
These issues are significant and bringing attention to them is important. People living with chronic conditions and disabilities deserve more recognition and more support.
Medically reviewed on January 20, 2023
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About the author
Nia is a chronic illness and disability advocate from the United Kingdom. Living with many conditions herself, Nia founded The Chronic Notebook platform on Instagram in 2019, now with 18K followers and growing. Since then, she has used The Chronic Notebook across online channels to spread awareness and educate others on issues around chronic illness and disability. In 2020, Nia won the ASUS Enter Your Voice Competition, receiving a grant to fund projects related to her work. Nia continues to work with charities and companies with illness and disability as their core focus.