As it turns out, I’m NOT a double winner. I found out from a letter in the mail. To be frank, I was really kind of hoping for a “real” diagnosis. I know, I’m ashamed of myself for saying it. But, I’m inclined to admit, it would be so much easier–emotionally, at the very least.
I was tempted to wait out the pursuit of an answer until my trip to Stanford but this appointment was scheduled a year ago, so I went.
Mistake. Not only do I not have Lupus or Sjogrens, according to Dr. Christopher Wise at VCU Health, I have “nothing detectable except a little arthritis.” I should’ve just thrown a vial of my blood into his lab from my car window. Drive-thru lab tests! No human interaction necessary! Do they do this already?
There’s still a big part of me that wishes I had something namable, sometimes more than something treatable.
I’m eternally thankful for the ME online community and all of the professional support from organizations such as ProHealth, Phoenix Rising, IACFS/ME, Solve ME/CFS Initiative, Health Rising, #MEACtion (Jennifer Brea), and countless others (sorry but I have limited space here) that continue to validate this mystifying condition that is real, that is ME.
Seeing someone who looks normal (someone who maybe has a certain type or stage of cancer, or diabetes for example) and telling them that they are fine despite EVERYTHING the patient purports to experience is cruel. I have a doctor friend who said the best professional advice he ever received was this–if all else fails, ask the patient.
The Hippocratic oath strongly affirms that medical professionals (paraphrasing) do no harm.
Isn’t neglect often just as injurious as direct harm? I know that if I walked out on my three year old, I’d be charged with neglect and there would be legal consequences. My fitness as a parent would be in question.
Neglect: to be remiss in the care or treatment of
As I was writing this piece, I received a phone call from Dr. Wise (insert innuendo?).
He called (two days after I got the “results” in the mail). He was nice enough. He just said that ME (he used the term CFS as he was unfamiliar with ME) was baffling and that many systems were involved but there was nothing inflammatory about it as is true with other autoimmune diseases. I asked him if he was familiar with the history of MS, for example. Like so many diseases, MS remained ill understood for too long. MS was observed and noted in 1838 but it wasn’t until 1933 that MS was understood be primarily autoimmune. That’s well over 100 years of people suffering. It wasn’t until 1981 that an MRI was used as a tool for diagnosing MS. That’s another 50 years and still there is no cure.
In the Middle Ages, patients with the bubonic plague endured bloodletting and were told to admit their sins to get well. It wasn’t until 1519 that the earth was confirmed round.
Insofar as treatment, Dr. Wise was polite, and utterly dismissive. He fell short of his commitment to the Hippocratic oath.
While cautiously optimistic, I remain grateful for institutions like Stanford and ALL of the institutions that seek to better understand and hereby legitimize the very real ME/CFS–an illness with far-reaching repercussions for the individual, their families and the extended whole, round earth.