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Carrying the Financial 'Baggage' of Rare Disease as a Teenager

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As a 19-year-old, what did you worry about? What sorority is throwing the next party? Who was dating your crush? What’s for dinner? Who’s clearing the full sink in your apartment? What did you get on that calculus final?

These are all valid concerns of a 19-year-old from my perspective. I wish that college, work, a social life, and whatever else I chose to include in my life was all I needed to worry about. Instead, I have been given a different hand — a hand far more challenging than I ever imagined and a hand I wouldn’t wish on my very worst enemy.

For almost five years now, I have been fighting a battle unlike any other. It is a battle I cannot fight alone. I tried, but I do not possess the skills necessary to fight and win the war alone. In the last four years, I have had countless hospitalizations, surgeries and procedures to control my sometimes uncontrollable body.

My whole life, the only thing I had to be concerned about was my deafness and managing my hearing aids, which became cochlear implants in 2010. That is, until I developed reflex sympathetic dystrophy/complex regional pain syndrome (RSD/CRPS) in my hand in 2012. With that diagnosis came 28 week-long admissions to date, countless prescription medications, and even more diagnoses. Anyone with a chronic illness might tell you it is nearly impossible to only have one chronic illness.

Sadly, I have found that to be true as the RSD/CRPS has ravaged just about every organ system in my body. Up until now, I had always been protected by my parents’ insurance plan. Now that my problems have become so complex, my doctors are demanding I see a particular specialist not covered by my insurance to diagnose an extremely rare condition known as stiff person syndrome (SPS). They refuse to treat me until I see this specialist. In order to see this specialist, I have to travel eight hours away, stay in a hotel for up to a week, and have all the testing this new specialist could potentially want done, in addition to the cost of two people being away for a week — all without insurance coverage.

At 19, I’ve had a job where I woke up at 5:30 in the morning, worked until 7:30 at night, often not getting to bed until 10 p.m. while taking summer classes online. To most, it probably sounds like torture. But for me, I would do anything to have that job as a waterpark lifeguard again, even though it was barely a minimum wage job.

This summer, my family is faced with two hospital bills of an unknown amount. I can’t work or function optimally for school until this condition is diagnosed and treated, which makes matters even worse. I can’t make money to help my family help me. I am wheelchair-bound and unable to drive due to high doses of medications.

I don’t want to have to worry about my family’s long-term financial security because of my poor health and expensive medical needs. We should be worrying about things like college and summer vacations. As this appointment with the specialist approaches, I feel very cornered. Without this specialist’s diagnosis, I don’t get treated by the doctors in my insurance plan. Without treatment, I am stuck. I feel like every day I have to worry about something related to my health. I always feel the need to sacrifice something to reduce the financial strain. Everyone tells me not to worry about the money, but it doesn’t grow on trees. I don’t want to put myself or my parents in a bad financial position.

All in all, a 19-year-old, hardly a kid, but barely an adult, should not have to worry about their medical bills on top of their poor health. No one should actually, but I kind of wish I could enjoy the young adult “spend what you make” lifestyle where occasionally mom and dad throw in a few extra bucks. I have worked hard for what I have. I can’t wait for the day I am able to work again, have more than $94 in my bank account, and say that I have worked hard to earn it.

young woman wearing gray t-shirt

Follow this journey on The CRPS Ninja Chronicles.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Originally published: April 21, 2016
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