Mind you, it took a few years to discover what was really wrong with me. There were all sorts of diagnoses, hospitalizations, misdiagnoses. This part of my journey is the same as many of us with a chronic disease. During my arduous journey, I came to realize a sad fact of my beloved world: it is a world of suck it up and shut up. Not only do we deal with the crushing symptoms of our illnesses, but then we are forced to deal with a culture of health care that is by its very nature not equipped or trained to evaluate, treat or understand the chronically ill autoimmune patient, and we are suffering for it.
At first I thought I was the only one. I had never heard of anyone else in my community with lupus or even an autoimmune disease. I noticed something right off the bat: my doctors started treating me differently. Even with my labs as proof, the whiplash of my providers’ relationship with me from when I was healthy and in for an occasional flu to baffling symptoms was shocking. I have had my share of eye rolls, to outright long sighs, to “Mrs. Hayden, what do you want me to do?” …um, diagnose me, fix me, be my doctor. Only with positive lab results was I given any sliver of respect in the military doctor’s office. My last internist told me on the side how he could not understand the rise in the diagnosis of “autoimmunes.” He used air quotes and raised eyebrows. He went on to imply it is catch-all diagnosis for the “crazy, lonely, complaining, hypochondriac” military spouses. While there are compassionate, caring providers in the military health care system, it is my experience they are few and far between.
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