Part love-story, part journal of her medical odyssey, “Misdiagnosed” reads like a mystery story – attempting to figure out what is going on with Nika’s body. It is a humbling, uncomfortable, and sometimes confusing read. It is humbling to have a chronic illness that was easily diagnosed and almost always treated successfully when I compare my life to what Nika had to go through! She is incredibly tenacious both in her unwillingness to give in to the disease and in her search for a full diagnosis, which swings into full force only after her grandmother died. Discomfort comes from the often vivid descriptions of Nika’s symptoms – from throwing up blood to fainting – and invasive medical tests. At some point, I started to skip the details because I had enough (although, again, that was humbling: Nika had to go through all this!). Some of the side stories, such as her parents’ own illnesses, also seemed unnecessary as they didn’t add anything to the unraveling of the mystery.
Confusing to me was her claim to be single… Through most of her odyssey, she was accompanied by a boyfriend, Marc. Sure their relationship fell apart just when Nika thought it was time to marry (after 10 or so years) and it was strained by her illness and his infidelity. And yet, Marc went with her to a lot of medical procedures and emergency room visits. He was there to take care of her. After he left, she recounts one visit that a friend of hers helped her with. Then she’s back in a relationship with a man who takes care of her – and sleeps with her. Not what I would call “single.” Although maybe this just calls into question the whole idea of single vs. coupled. Maybe it’s time to abandon those labels!
The book also raises other questions that Nika doesn’t address in detail. In addition to her boyfriends, her parents also took care of her. What if she had been thousands of miles away from her parents like so many of us? Though the most disturbing question that kept going through my head, which Nika picks up a bit in her last chapter: What if she didn’t have insurance? In a country where people remain untreated, go into bankruptcy if they do get treated, and sometimes die because they can’t get the treatment they need, it is almost a luxury to have a chronic illness and have insurance.
In a lot of ways, Nika’s book could serve as a wake up call: In a society with an increasing number of people living by themselves, it is crucial that we start creating social systems that reflect that demographic trend. For starters, we need an actual health care system where people care about health – and not leave patients in the dark and cold, as Nika often ended up, literally. Single payer would be a huge step in the direction of caring. Then, we need to start asking the questions Eric Klinenberg suggests and to start implementing his proposals. Instead of pretending that we can go back to the “good old days” of the traditional family (the days that were neither good nor traditional), addressing the implications of recent demographic trends would make it so much less scary to be single and have a chronic illness!
While Nika’s book is sometimes hard to read, it raises so many important questions about the US medical system that I very much hope everyone will get an opportunity to read it, that is, the manuscript will soon be turned into a book. When it comes out, I can highly recommend reading it (even if you’re squeamish… you can always skip some sections…).