How hard it is to be a patient these days.......Reading the New York Times articles published this week (one is linked to the title of this post) that highlighted several real-life examples of the difficulty getting a timely diagnosis, finding the best care for your diagnosis, and then actually getting that best care surely showed the challenges that each patient faces in order to advocate their own way through the maze of our current uneven (i.e., broken) health care and insurance system.
I have had to do this time and time and time again. Just a few days ago I had one of my doctors tell me that what I have done right is to never give up and question, question, question. The previous time I was in his office, he had a 3rd year medical student observing the visit. On the way home, my husband asked me if I was paying attention to the med student during the visit. No, I really wasn't, why? My husband said that he watched her eyes get larger and larger and larger as I dug deeper and deeper and deeper with my questions for this doctor.
This particular doctor actually told me during this week's appointment that he hopes that I will talk about the importance of this self-advocacy process when I am talking to groups. I had so many thoughts as he said this.........He hardly knows me and I hardly know him to gauge if he has a clue in terms of realizing how much energy, time, and work such a process is for each and every patient (when they are often not feeling well at all to boot!).
In any case, the two of us decided that at the current time I can relegate him out to my "back 40". I often joke that I have a stable of docs to keep me (and all the late effects that continue to show up from my childhood cancer therapy) patched together. However, the fact that patients need to be their own best advocate is no joking matter. Unfortunately, it is the only way to navigate the health care system these days.
I remember the moment when it occurred to me that my oncologist was not thinking about me and the particular nuances of my case for 24 hours/day (oh, duh! how naive was I?) Another way that I have looked at this sudden recognition (the proverbial light bulb moment) is to link that sudden awareness as the real beginnings of my self-advocacy efforts that ultimately led to a more global effort on behalf of cancer patients everywhere.
Don't think that because I have been at this for a long time that it becomes easy or fun. In fact, it is neither, and I find that I grumble a lot about the challenges for me plus all of you out there who do not have the medical background that I have. I am just going to pick up a new book from the library called How Doctors Think by Jerome Groopman, MD. I'll report back my further thoughts on this issue when I am done with that book.
Meanwhile, I'm off to make Caponeta using all local vegetables, including our home-grown garlic which we just harvested. I still need to purchase olives and olive oil that are imported from Italy, as even with global warming they don't grow yet in Michigan! The best recipe I have found is on my web site (link on the side of the screen under my favorite web sites). On my homepage, click on Recipes, then scroll down to Fruits/Vegetables to find the link to Caponeta. I always make a big pot of this and often just spoon out a bowl of it to eat as it is that good. Bon appetit!
Diana Dyer, MS, RD