I can remember from a very young age my mother fighting to keep my brother and I insured. These official matters are not ones that a small child is usually aware of however; our situation was a little different. My brother and I were raised by our single mother, who was born deaf. Often we found ourselves playing the role of interpreter for our mother. I can remember the endless amounts of hours spent at the welfare office while we waited our turn and bureaucracy set its hoops up for us to jump. Luckily, we were both healthy children and even in moments of lapsed insurance, we got by okay.
However, sometime around 12 years old, I started developing stomach pains. It was mild at first. I joked about it with my friends. Every time I ate food, “my baby was angry”. Eventually the symptoms got worse and my life was being disrupted. I was missing so much school, I was falling behind and any social life was out of question. When I was 14 I started seeing a gastroenterologist to figure out the source of my pains. By this time I had done plenty of research on my own and suspected I may have Crohn’s Disease, an autoimmune disease of the digestive track. There was a family history and my symptoms were spot-on. I expressed this to my doctor, but as my insurance wasn’t the best and my mother couldn’t afford extensive tests, they decided to try and rule out other things first.
A couple months after my 15th birthday, a few days before I was scheduled for one of these “let’s rule it out” tests, I ended up in the hospital. I had stomach pains I had never experienced before and was sick beyond belief. It turned out I did in fact have Crohn’s Disease and the inflammation had gotten so bad my intestines were blocked. I spent ten days in the hospital and came out with a recommendation of treatments and medications that Medicaid scoffed at. A combination of the anxieties that doctors and medications gave me and the fact that we could not afford the medications I really needed, I chose to not medicate and try to manage my disease through diet and stress management.
This worked out okay for a while. I had flare ups, absolutely. But I thought I wasn’t doing too badly. I graduated high school with honors and was preparing to move away to college. Things were going great! Then, early August 2010, my mother had a series of massive strokes and passed away a week later. My plans were turned upside down. Although, I was planning on moving away to college, I couldn’t stomach the thought of staying in Florida with no home to go home to on school breaks without my mother. Without much planning, I blinked and moved to Nevada. I had a sister that was a couple hours away and offered to keep an eye on me while I got my bearings.
I hit the ground running, going to school full-time, working a minimum wage job, trying to figure out how to be a real-world adult that all of a sudden had things like rent and electricity to worry about. Insurance was the last thing I could afford as an 18 year old. I let my stress get the best of me and my health slipped away from me. For the next 4 years I spent more time sick than healthy. My attendance was unpredictable at work and school. Personal relationships were affected. My social life was overrun by the anxieties that came with it all. When pains were unbearable I would break down and take myself to the walk-in clinic or the ER and end up with a bill I had no means of paying. This cycle continued as my bills ended up at creditors and my credit score tanked.
By the summer of 2014 I had perfected a “ignore your symptoms and they might go away” pattern. I discovered I could hold my breath and sharp pains disappeared or if I just had a liquid diet, my pains weren’t as bad. One particular weekend, I woke up in the middle of the night with pains I had never experienced quite before. I was dizzy and nauseous with pain. I tried to wait it out but halfway through the next day I was incapacitated. I finally decided I would have a friend take me to urgent care. I would just have to get another couple hundred dollar bill for some steroids to kick out whatever infection was going on. Wrong. I got to Urgent Care and as soon as the nurse took my vitals I was rushed to the emergency room across the street.
I was too worried about my lack of insurance and the bills I might have acquired that I let my symptoms get so bad I ended up going into septic shock. While I was busy holding my breath, an abscess had formed in my small intestines, broke through into my colon and was infecting my blood stream. I had an emergency small bowel resection and partial colectomy and was left with an 8 inch scar and a stack of bills as big. I put off going to the doctor because I was afraid of a few hundred dollar debt and at the end of my two week hospital stay, I was greeted with a grand total of $180,000 in medical bills.
At 22 years old, there was no way I could ever pay that in my life, or the next. Thankfully around this time my sister had been working in the hospital industry and helped me find assistance available and helped me get connected with a social worker who helped me get enrolled in Medicaid. I was able to get all but a few thousand dollars covered, by the grace of the insurance gods. Insurance became my main priority from then. While Medicaid saved me, I needed better coverage to cover the specialists I required. I ended up quitting a job I loved that didn’t offer insurance or pay enough for me to provide my own, (especially with preexisting conditions) and found a job that could provide me what I needed. While it was at first a strategic move, it turns out my new job has provided joy and experience I never knew I would love!
Insurance is not just peace of mind for me. Insurance means the difference of life and death. I no longer avoid the doctor in fear of debt. I opt for the best insurance so I know my health needs are covered. Having insurance has also allowed to me address other health issues I was having. Just a few months ago, I was finally diagnosed with rheumatoid arthritis. Once upon a time, this diagnosis would only cause me stress. Now, I am grateful knowing I have the resources I need to take care of myself. While I still am struggling day-to-day, having insurance has made living a normal, happy, healthy life possible.
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