Perhaps a better word would be a self-advocate. However, since in my personal experience I feel that I am constantly battling with someone in order to make sure that I am getting the care I need in order to preserve my health, I prefer the term fighter.
I have had the great misfortune of having to gain approval for my treatment and set up at-home infusion from two different health insurances in the same year. My first experience, while I was still under my parents health insurance, was a disastrous nightmare. Nobody knew what was going, and nobody told me what they did know. I found myself in the rather frustrating position of having to manage and advocate for my care, while not knowing what that entailed, as no one would tell me. Thus I called multiple different people, multiple times, until finally a month later I was able to get my treatment near the end of May.
Fast forward to this fall. I have had the great fortune to be accepted to a Ph.D. program at a highly respected research University that also offers excellent health insurance to its graduate students. I was told my pre-existing condition would be covered completely. In an attempt to avoid the disaster that was my first experience dealing with a health insurance about my treatment, I began making phone calls almost 3 months before school began. I was told nothing could be done until I was officially on the health insurance September 1st, including finding a new immunologist.
September 2nd I was in the health service center getting a referral to see an immunologist. I also went in person to the health insurance office to begin the process of getting my treatment approved. It is then that I learned that I am not "officially" on the health insurance until I register for classes. However, I couldn't register for classes until September 16th. Needless to say I was frustrated. But I was assured that my file had been flagged and as soon as I was registered I would be assigned a case manager and everything would move quickly. Fast forward to September 16th. I'm sure by now you might be able to guess what happened (Hint: If you thought that everything progressed smoothly and that I was all approved for home infusions, you have not had enough experience with health insurances). I was told I was not activated in the system yet, but I would be monday and my file had been flagged as high priority and as soon as I was activated they would get me a case manager and everything would be set up.
As I write, it is a Friday evening, all offices are closed until Monday, I need a treatment Tuesday, and I have heard nothing. Throughout the week I called my doctor's office to remind them to give my contact information to the home infusion company. Then I had to call the home infusion company to make sure that all the paperwork was completed on their end. I spent over half an hour in the Health Insurance office making sure that there would be no difficulties getting everything approved ("Oh no, it will get approved right away" they say) and that I will hear from my mysterious case manager tomorrow ("I have sent him emails flagged high priority. He will call you, and if he does not I will call you. Either way, you WILL hear from someone, I guarantee it"). In spite of multiple guarantees and assurances the day goes by without a word, and I find myself again making calls and leaving messages wondering why I still have not heard anything. At this point I do not know that I will get my treatment on time, in spite of my attempts to set everything up months ahead of time. Regardless, it will most likely affect my schoolwork, something I have been working so hard to avoid.
What is the point of this post (Besides being a forum in which I can vent my frustrations)? Heaven forbid whoever is reading this has a serious health issue. But if you do, be prepared to fight for your health because if you do not, no one else will. Call, inquire, leave messages, bother the necessary people everyday. Learn what kind of process needs to be completed and who is involved in the completion of that process, and then follow-up every day if necessary. You need to be the advocate for your health care, and you need to be prepared to step into the boxing ring and face off with the big bad health insurance. And remember that when nothing is working out and you are frustrated out of your mind, some blessed soul invented ice cream.
Speaking of which, I should go finish this bowl before it melts.
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