twenty something and sick in america

Each person in this country has had their own unique experience with our health care system. My experience has been one of great struggle. I hope that by sharing my story, it may shed some light on the current debate. I'm posting it here so that anyone who reads it can link to it or share it in hopes of making progress on improving healthcare for Americans.

Summer of 2006 was an exciting time for me; I had just graduated from college and I had big dreams. I embarked on a six month internship with a Intel, and while I was there I got a heavy dose of what working for a large corporation was like. I decided to change my direction and I moved to New York City. Amazingly, at 23, I landed my dream job. I was working for a small research and design consultancy that did interesting, ambitious, high profile projects. Like so many small consulting firms, they did not offer insurance. I hesitated to make that kind of sacrifice, but I couldn’t imagine turning down a once in a lifetime professional opportunity. I’ve heard so many people say that 20 somethings don’t have insurance because we think we are invincible. I can’t speak for everyone, but in my case (and many of my friends) we are terrified by being uninsured. Being young creative professionals, we seek health coverage... but it's unexpected. We are up against an invisible wall.

After a few months went by, I was still loving my job. I looked into insurance options, but they were so far beyond what I could afford that I could hardly consider them. Even though I had frequent and severe migraine headaches, paying the monthly premium was not an option. By the time I was finished paying my rent and bills I typically had a about $200 remaining for the month, and the cheapest plan I could find was $450/mo. During Fall ‘07, I developed an ulcer in my throat. It hurt so bad that I dreaded eating. I ate as little as I possibly could to avoid the burning, and ended up loosing weight. One of my friends called her family doctor as requested that I be worked in at a special rate. The medicine he prescribed healed an ulcer that I had for 4 months in just 2 weeks. I was relieved. Even though I decidedly could not afford a plan that would cover doctor’s visits, my recent brush with the system scared me to the point that I began looking into catastrophic insurance plans. They were around $180 per month, and would kick should I incur medical expenses more than $10,000. I was devastated. I was working roughly 60 hours a week in a job I was exceedingly proud to have… and I was still broke and unhealthy. After just one year of having my dream job, I left it behind.

This time, I decided, no more small consultancies. Health benefits were a non-negotiable. I started my job search with optimism. While looking for a new job in Spring of 2008, my health took a significant downward turn. At first I just had a rash and I felt mysteriously sore. Within a few weeks that soreness turned into weakness. Getting dressed every day felt like a workout. My arms barely had the strength to assemble a sandwich. At this point I knew that I simply had to see a doctor, so I went to the free clinic. The doctor spent about 30 minutes asking me questions about my symptoms, and after that they told me that they wanted to run some tests. The tests would cost several hundred dollars, so they referred me to a social worker. The social worker told me that if I could not afford an individual plan, my best option was to apply for Medicaid. It would take 6-8 weeks to see if I was approved, yet I needed tests immediately. She also told me that if I began making money again, I would no longer be eligible for the plan. That path seemed futile, so out of sheer desperation—I fibbed my way through a screener for an individual plan in Georgia, where my family lives. By omitting the facts about my current health I was approved. The next day, I boarded a plane to Atlanta. The plan started immediately, but I had to wait two weeks to have doctor visits covered. The next two weeks were the longest weeks of my life. I became weaker. At this point, I could not bathe myself. When I went to bed I could barely pull the covers over my body because they felt so heavy. Finally, the two weeks came to a close and I saw a general practitioner. He ran some blood work and referred me to a Rheumatologist. I had muscle and skin biopsies taken and they were sent to a pathologist. Within three weeks, I had a diagnosis. I have Dermatomyosotis. It is a rare chronic disease in which my own immune system attacks the muscles in my arms, legs, and esophagus, as well as the skin. The mystery was solved, but the battle was hardly over.

A few weeks after I had my diagnosis, I was informed that the underwriting department for the insurance company was reviewing my case. As if I wasn’t having a hard enough time coping with the reality of my sickness, I now had to prepare for the very real possibility of being kicked off of my health plan. I knew my only way out was to get a job to acquire coverage. Unfortunately the prescriptions I was taking weren’t working too well. My weakness continued to be severe, the rash spread all over my body creating open sores, and I developed swallowing difficulty so grave that my doctor advised that I should not eat food unattended should I choke. My world was crumbling, and out of necessity for the next few months I devoted my energy to updating my resume and adding new projects to my portfolio. Miraculously, I landed an interview at Microsoft. Traveling on my own was a scary prospect. How would I lift my luggage? Would my interviewers notice anything was wrong? I strategically packed my bag to keep it light. On the day of the interview I wore a turtleneck (in June, by the way) because my neck was covered in rashes. We took the stairs to the meeting room, and my heart raced as I pulled the weight of my body with each step, trying my hardest to keep up with them. The company provided lunch for the group, and I nervously chewed my food— hoping that I would not have one my my routine swallowing mishaps in front of them. Somehow or another, I made it through the day. And what's more... they offered me the job.

That summer was spent making preparations to move. I was scared to begin working regular hours, after all I barely had enough energy to drag myself from doctor visit to doctor visit. The pressure became even more intense, when as I had expected— the individual plan I was on was declared null and void for past and present costs. I was now in debt for thousands of dollars worth of services. I tried to shake my fear of beginning work in my fragile state because the alternative of further amassing debt was even more grim. Microsoft offers some of the most comprehensive benefits of any company in the world, so I simply convinced myself that this undertaking would truly change my health for the better. Looking back on it, I don't know how I got through those first few months. I moved 3,000 miles away, stayed in temporary housing and a motel, I feverishly hunted for apartments, and I was also visiting medical specialists and receiving treatments— all the while trying to fill my new daunting role at Microsoft. After those first several months passed, however, something amazing happened: I started to feel better.

I had done it. I worked the system and parlayed my skills to save myself from a terrible situation. Yes, it was bad to begin with— but without landing that job, it most certainly would have been far worse. I'm not 100% better by any stretch, but I can get through a normal day without much struggle... which is progress I couldn't have imagined a year ago. It's something of a Cinderella story, really. I was sick and uninsured, and now I am on a famously comprehensive plan with my health steadily improving. There's just one big problem... this is the United State's version of a happy ending. This is the best case scenario for an uninsured person getting sick in America. Having lived it myself, I can tell you that I would not wish this fate on anyone. It has been the great struggle of my life. But the hardship isn't over for me. I used to have dreams of starting up my own design consultancy, but given my dependency on my health insurance, I don't even consider that path now. Generally speaking, I feel trapped.

I ask everyone who is having reservations about a public option to consider how common it is for young, ambitious, hard working people in this country end up in a health care nightmare like mine. We can do better. We can start today.