I have structured my life around maintaining health insurance coverage. Diagnosed with rheumatoid arthritis at age 22, my mother quickly impressed on me the importance of having health insurance. She was all too familiar with the costs of chronic conditions, as 17 years earlier my older sister was diagnosed with Type 1 diabetes. I wouldn’t hazard a guess at the number of times my sister was hospitalized, but it’s scores of times. When back at home, there were always the daily costs of her life-saving insulin and the medical supplies needed to deliver it, as well as to check her blood sugars. The costs were staggering. With health insurance, my parents still struggled to pay their portion of the costs. Without health insurance, they would have been destitute.
I graduated from college eight months after my diagnosis, and my mother advised me to continue to take classes, as my parents could continue to claim me on their insurance until I was 26, provided I was enrolled in at least two college courses. This was in 2001, long before the Affordable Care Act, so I was fortunate that my parents’ plan had this provision. For a year I took classes I didn’t need because the tuition was less than my Enbrel would be without insurance. I made it a priority to go ahead and get my master’s degree so that I would complete it before my all-important 26th birthday.
I knew I could only apply for jobs with good benefits. Fortunately I was hired for a position that would continue to cover my RA expenses (well, some of them, at least). I continued in that job for four years. When I decided to resign from my job so that I could go off of my arthritis medications to get pregnant, I shelled out the incredibly expensive monthly fee to maintain COBRA insurance. While it cost over a thousand dollars a month, it was cheaper than all the prenatal care and delivery expenses would have been, especially as my first baby had to be in the NICU. When she was five months old, I cried at the necessity of returning to work and entrusting her care to another. Yet, my COBRA was running out, so the option of being a stay at home mom a while longer wasn’t viable. My husband owns his own business, and when I looked into what it would cost to get a non-employer provided plan, I was stunned at the costs.
I ended up getting a part-time job, which paid only a little more than the cost of a sitter for my baby, but it provided our family with the insurance we needed.
In the five years since her birth, I have continued to search for the holy grail of jobs: something that pays enough to be worth my time, something that uses my brain but that isn’t so stressful that it sends me into flares, something that allows me some flexibility to tend to my health needs and those of my family, and something that provides benefits. That’s a tall order. So far I haven’t found anything that meets all of those criteria. There was a job I turned down with an independent bookstore that would have been amazing, and would have fulfilled all those criteria, save that ever-important insurance coverage. There have been all kinds of opportunities I’ve never given serious consideration because they didn’t provide health coverage.
Now that the Affordable Care Act is in place, I’m hoping that it might provide some additional options for me. I’ve looked into family coverage, and have discovered that it would cost more than my current employee health insurance contribution, but less than COBRA. I haven’t delved deep enough to find out whether this ACA plan would pay for my Orencia and other RA costs. On one hand I think I’m nervous to find out, as I’d love to figure out my next career step without fixating so much on benefits. It would be wonderful to discover what career is the best fit for me, and not just the best fit for my RA expenses.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?