One of the biggest complaints that patients have is that they feel that they are not heard. Physicians often dismiss what they don’t understand or can’t put a diagnosis to, often questioning the patient or believing that it’s a mental health issue. If the patient doesn’t have a mental health issue at the onset, he certainly will after he feels like he’s been protesting for years and no one takes his concerns seriously.
I had a brief period of visibility when I was in the midst of diagnosis. I more often felt that they were more interested in validating methods of diagnosis rather than making me healthier, but I was glad that they were at least trying to find ways to get a quicker and more accurate diagnosis.
That being said, my dysautonomia is now in the doctorless phase, and I once again feel invisible. Why? Because my communications go unanswered. I have contacted (MC, LS, KC, JA) and I might as well have sent messages in a bottle thrown into a frozen sea. JA, a PA, answered a phone call, but the email I sent as follow-up is still hanging out there somewhere. Nor did attempting to call the physician (KC) and sending it directly to him past the gatekeeper provide any help. MC, a doctor I had seen previously but was no longer under his care? Crickets. LS, a supposed leader in the field? Apparently, I’m ignorable.
I am frustrated but not surprised. So, to those of you who are too busy, too uninterested, too callous, I am telling about my interactions with you. I’m not in the business of slamming people, but I’m sick of feeling this way, and potential patients need to know. They can do the sleuthing or contact me privately. If anyone wants to contact me I will do my utmost best to respond promptly. Also, please feel free to share your experiences here.
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