I am only on my third family physician in forty-seven years. My first doctor died while still practicing medicine in his mid 80’s. My second doctor retired. I do not recall my health issues in great detail with them as my doctors. But my current physician (and technically, her spouse who practices with her counts as my third doctor as well) knows me for being the kind of patient who only seeks out care when things are no longer tolerable. Or at least I used to be.
Perhaps the most serious ailment that she had to deal with me, was a strange blistering of my skin. I had been trimming hedges and pulling weeds, and evidently had come in contact with poison sumac which was far worse than poison ivy. As I entered the office, I heard the receptionist comment, “tell Dr. J that Paul Edelman is actually here. This has to be serious.” Prior to that, on average I was only seen for annual and seasonal allergy shots.
For most of my life, my body has been very reliable. The only time that my body had disappointed me was when I was diagnosed with Hodgkin’s Disease. My body had betrayed me as I was told that I had cancer. The next eighteen years my body had returned to normal, and so did my appointments with my primary physician.
But over time, I had come to know many other cancer survivors who have to see doctors more frequently. The majority of them seeing primary care level doctors who many times end up stumped as symptoms and testing do not necessarily make sense for the average healthy individual. What happens next, is the patient has a pretty good chance of being diagnosed as hypochondriac. No matter what gain cancer survivors have made in care, seeing is disbelieving because it just does not make sense. But if the patient is fortunate enough to live near a long term survivor clinic, a cancer survivor has a better chance of finding an advocate, one that will not treat the survivor as a hypochondriac.
That is right, I said a hypochondriac. Many of us have grown up hearing that word before, referring to someone who believes that everything is wrong with them, and frustrated that the doctors can find nothing. This is a situation that unfortunately is all too familiar to the cancer survivor of a decade or more, who has not been followed up by more than a primary care physician. An average healthy 30 year old will not really draw alot of attention for health issues, because there may be no history of concern. But an average healthy-looking 30 year old will give off that same appearance.
And just as my original diagnosis of Hodgkin’s Disease was overlooked for a case of the common cold, so can issues related to the extreme treatments that were used on us so long ago. Bodies of long term cancer survivors once again find themselves having their bodies betray them again as doctors attempt to use normal methods to common symptoms that should have typical responses. But we cancer survivors do not fit the textbook. Not just my body, but so many others’ bodies, betraying us all with our unusual symptoms. Because the diagnosis is not obvious, we feel we are hypochondriacs, often times by our own tongue.
But then a major event hits, like a destroyed artery that needs to be bypassed, and the world of cancer survivorship begins to turn. Up until recent weeks, the betrayals by my body had all been physical. Two weeks ago, it has possibly become mental. My mind is taking away the last thing that I hold in total control of my life. I am losing my ability to internalize everything that I take on. My body is betraying me once again.