I went to my doctor about the weird, gnawing stomach pain thing. He ordered some blood work and an ultrasound of my stomach. A week ago, I had both of those tests done, and both labs said the results would be in my doc’s hands by Tuesday. I waited. I felt very conscious of trying to be “good” and not be the anxious, high-strung patient. I know that is probably stamped all over my chart anyway, yet still I try to preserve my humanity and avoid being pigeon-holed.
I called yesterday morning and asked the harried (and thoroughly incompetent but usually nice) receptionist if my doc had my test results. First, she couldn’t figure out who I was, because I stated my name, which is what I’ve always gone by, Genni. I know this woman. She knows me. She says, “Who?” I say, “Guenevere?” OH, she says, Gwen!
There is no good reason under the sun to try to correct this at this juncture, even though I have never gone by Gwen, some people insist on calling me Gwen and no real amount of polite reminders can help. She also sometimes calls me Genevieve, which makes more sense with Genni but no sense with Gwen.
Gwen! she says, hurriedly, I will have to call you back about that! and hangs up.
I wait. No one calls me back.
I have a fitting for a client scheduled at 8:30 am this morning. Naturally, my doc’s other (incompetent, unable to understand patient confidentiality) assistant calls then. I have to go outside because I work in a concrete building. She says, “He wants you to come in for a follow-up about your labs.”
Has no one in the medical profession ever watched TV? Do they not know the feeling a person gets when they can’t get their results over the phone and have to come in? That means you’ve got cancer, that’s what that means, and that is the way my brain works. Already, I’m starting to feel panicked and shame (because I am panicking, I am always there to kick myself when I’m down), so I take a big risk and say, firmly, “Can he see me today, then?” Oh, no, she says. I go out on a limb and say, “I am not the sort of person who can spend a weekend obsessing, so he either needs to see me or call me.” I imagine her deciding what ink to use on the “High Strung Anxious Sort” stamp for today’s entry into my chart. She tells me to hold on. Then she comes back and says that He says it’s nothing, it’s benign, he just wants to go over it with you. Also, she says, they are “only here until noon today.” I imagine them clinging to their desks, shouting that they have more patients to see as, at exactly noon, a giant vacuum cleaner hose drops from the sky and sucks them all away until Monday.
I consider but do not offer to send him a co-pay and promise to say I had an office visit so his (also incompetent, costing him huge amounts of revenue) insurance people can file a full claim if he will JUST GIVE ME THE RESULTS OVER THE PHONE.
So I have an appointment on Monday. Also, I feel like crying, and like I am stupid and worthless, and like now there will be no end to the anxiety I have already had about this all week. For two days this week I was sure that I looked maybe a little sallow. Maybe my eyes were yellow? Maybe my liver is really damaged from all that shameful, bad alcohol I drink and I will die.
My inner Vulcan told me that if I am “not sure’ if I look sallow, then I do not look sallow, see also: very healthy diet, EDS, IBS, POTS, alcohol the ONLY bad habit, please shut up.
For another two days I decided my thyroid was too big looking and maybe I had a goiter or would have to have it removed or had cancer and would get really fat and lazy on thyroid meds.
The Vulcan asked me to please find something constructive to do with my time and to stop babbling. Also, stop looking in the mirror and stop asking Dr. Google stupid questions.
The literature about EDS often refers to the need for counseling to help sufferers deal with the mistreatment they have often received at the hands of medical providers. It is a known fact that we get the short end of the stick and are typically misunderstood. I have a doc who understands, but he is actually just a nurse practitioner and he is surrounded, like Sleeping Beauty, by thoughtless, incompetent, harried thorns who thwart me at every turn. At every turn, I walk away from interactions feeling like I’ve been given a wedgie and a dunce hat. I feel stupid and afraid.
It’s the most familiar dance I know, and I am a permanent guest at the party.