The Economics of Life With a Chronic Illness

The Economics of Life With a Chronic Illness

Lately, money is on my mind almost permanently. This has resulted from a series of life changes, and the fact that I have a lot of free time to ruminate over everything. Cash — more specifically, a lack of it — is a subject matter my brain loves to latch on to, especially late at night. 

Last evening, my brain took me back to a day in December. I went to the cinema to watch a film that was roughly two hours and 20 minutes. Halfway through the movie, my sacrum started to hurt, and my usual endometriosis leg pain began.

Limping, I went home. When I got to my bedroom, I put on my pajamas and lied on my bed. That sharp, pulsating pain was nothing new. In fact, it was a painful reminder, making tears stream down my face. 

My physical discomfort was telling me, once more, to forget about getting a regular job. Any position that would require me to show up every day was and will remain unattainable, thanks to my painful flare-ups. Lying on my bed, I thought about my future, my impossible plans, and my broken dreams, and more tears followed. 

While money often is present in my thoughts, I never really talk about it. In fact, I hide this side of my life. I love to be the one who buys the drinks, and who treats her friends to a slice of cake and a coffee. But I never tell anyone about my money woes.

The truth is, most people hate talking about money. 

On one hand, money is almost a taboo topic. You’d think that because I happily talk about my malfunctioning private parts, discussing personal economics should feel pretty casual. But it doesn’t.

Also, finding the right audience for this conversation can be tricky. Whenever I share my money woes to someone who is economically comfortable, there is always a feeling that they really don’t get what I say. They tell me how they are broke, too, but their definition of limited funds comes with a roof over their heads they happily own or a wealthy family background they can rely on. It leaves me staring blankly at them, knowing that when I say I have no money, I mean my bills took all of it.

No uncomfortable topics for these two, other than the lack of treats in my pocket. (Photo by Jessie Madrigal)

Basically, they don’t live with THE FEAR.

If you’re single, it’s the fear of becoming homeless, of losing the ability to fend for yourself. If you have someone in your life, it’s the horror of becoming a burden to them.

The day after I went to the cinema, I was aboard a train and ended up chatting with a friendly American who also lives with a chronic disease. He explained how in the U.S., his medications cost him roughly $213 (£170) each month. In the U.K., he spends $12 (£9) per month. As a university student, he hopes to be able to stay after he graduates.

Money is a huge weight on the shoulders of anyone who is chronically ill. 

In the U.K., we are lucky to have a public health system, called the National Health Service, or NHS. Yet when discussing money with fellow endometriosis patients, the subject of insurance comes up often. This is because waiting lists to access effective treatment are becoming increasingly long. 

In the U.S., endometriosis patients have it tougher. With no equivalent to the NHS, a simple surgical procedure can easily cost upward of $4,000 (£3,190). In some cases, insurers can refuse to pay. This happens often with endometriosis because it is considered a preexisting condition.

Endometriosis is a life-altering disease. Yet, it is not considered a disability, even when it immensely affects a person’s ability to hold down a regular job. We want to work. Some of us badly wish our careers back. To most of us, the word burden sends shivers down our backs.

The economic support endometriosis patients need — and deserve — does not exist.

From this small corner of the internet, I hope someone in power is listening. Someone who takes the life-altering effects of this disease seriously, and who is courageous enough to make the appropriate changes so the weight of this illness is fully recognized and taken off patients’ backs.


Note: Endometriosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Endometriosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to endometriosis.