In 2001, I developed a strange rash on my legs that, over a period of 5 or 6 months, continually got worse and started spreading to my torso, arms, and, at one point, my face and head. Thankfully, although I was going to school at the time, my parent's insurance continued coverage on dependents through the age of 25. I had insurance, I had access to doctors both at the University and through my parent's insurance that were good, and I (well, more like my parents) was able to afford the numerous appointments that I made during this period to try to figure out what was going on. After almost 6 months, I finally got a diagnosis for both the rash (vasculitis) and an autoimmune illness (lupus, which my mom also had). Thankfully, after receiving the diagnosis, I found a really great rheumatologist and began treatment that caused the rash to go away and solved a number of other ailments that I had (which had been caused by lupus).
Over the last 9 years of living with this illness, I am so lucky to have a very mild version of if. I have had no organ involvement, and only deal with ongoing joint pain and fatigue which I have learned to live and control. Nevertheless, at the age of 25, after being hired at a small firm, I found myself in a panic because I was on the verge of being without health insurance. My parent's insurance would no longer cover me, my company, because of it's size, did not offer group insurance (although if it would have, I probably would not have qualified- simply because the pool would have been too small), and I could find NO individual insurance policy that would accept me. Even though I had little health problems, because I had received a diagnosis of a pre-exisisting condition, no one would qualify me for health insurance. It was very stressful to go through this realization, and ironically, stress is a contributing factor to how lupus affects me (stress = pain & fatigue). I wondered why someone with health issues, who is already probably suffering in more ways than one, would be forced to go through such a stressful ordeal.
Finally, after coming to the conclusion that 1) I had a pre-existing condition and 2) I could not qualify for insurance I learned that my only option was to go on COBRA insurance for 18 months and then, when that ran out, I would be able to get on Texas Risk Pool insurance (although I've heard that once you go on that, you can't get on normal health insurance again, even if it's group- this may or may not be true). Again, I was thankful that I was in a position that I could actually afford the high monthly insurance payment ($500- almost as much as my apartment rental payment). I was on COBRA for almost 12 months, at which time I moved in with my soon-to-be fiance/now husband and, luckily, I was able to get on his insurance as a domestic partner.
So many aspects of my story are really just luck. I am lucky that I was diagnosed with lupus relatively early- sometimes a diagnosis can take years. I am lucky that I have a stable, well paying job. I am lucky that my husband works at a large company with group insurance. I am lucky that my illness has been in check for the most part and I have not needed serious treatment and can continue to work. I am lucky that I have a good selection of doctors and a wonderful rheumatolgist that my insurance covers. Many people are not so lucky, and those are the ones who will hopefully benefit the most from this new plan.
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