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To the Experienced Hospital Staff Member Who Couldn't Accept That I'm Rare

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I sit on a hospital bed — vulnerable, shaken by how unwell I became, waiting for your guidance to prevent this medical emergency from happening again. I am an unusual case. Rare. “Interesting” (which I have learned is never good in a medical sense). I have been told after months of medical emergencies that conventional treatments will not work with me, that something drastic will be required. I’ve explained this to you more than once, and we seemed to be getting somewhere, but today when you sit down things are different.

You talk to me as if I am a typical case. You make me feel like I am to blame for any deteriorations in my health and suggest that I must have been giving my injections incorrectly. You ignore my polite and careful reminders that I have tried the things you are suggesting many times before and ended up a little too close to departing the planet as a result. You tell me how long you’ve been working with this particular illness. You take my hope, piece by piece, until I am so desperate not to have to fight this hard for my life again that I find my voice and anxiously tell you I don’t really feel like you are listening to me.

“I am listening, I just refuse to accept what you are saying” is your response. My world crumbles around me. Tears burn in my eyes, but I cannot let you see them. My life is in your hands and you are unwilling to hold on to it. You have only met me three times and yet you refuse to accept that I know anything about my situation. You refuse to treat me as anything other than typical and tell me you have done your part and the outcome is now up to me. I want to crawl under the blankets and disintegrate. I want to give up. I wonder why I bother to speak. I suddenly feel so entirely alone in this, and feel that you are leaving me to die.

The problem is that you have specialized in this illness for as long as I have been alive and you are no longer willing to learn — you have too much experience and think you have seen it all. And when I break down because of your words, you say you are worried about my emotional state, not entertaining the possibility that you could have triggered such a response with your ignorance.

Placing your health in the hands of people you barely know can be a lot more distressing than others imagine. In an emergency or an unplanned hospital admission, reality asks us to rely on complete strangers, and circumstance simultaneously asks us to work with them and fully depend upon them. Well-meaning relatives and other people lucky enough to look at the situation from a viewpoint of near-perfect health often expect us to seamlessly and effortlessly take a leap of faith, not considering that sometimes doctors and nurses do not know what to do, and often belittle our own knowledge and experience with suggestions that doctors know what they are talking about and we should just put our trust in them. They may assume that because we can explain a rare condition in such detail, most medical professionals must share in the same knowledge. The more experienced the staff member, the more ideas they should have, the more likely they are to have seen a case as complex as the one brewing inside of us. But, as you have shown, that is rarely the case. 

Experience can turn into ignorance, and an unnecessary fight to get the correct treatment begins. So many times people say,

“I’ve been doing this job for 20 years…”

“I’ve treated many people with this condition…”

“I haven’t seen anything like this before…”

Staff sometimes go on the defensive, as if the information you are giving them in order to allow them to make a more effective plan of care is a personal insult to their ability to practice medicine. They may refuse to talk to your specialist team because they feel they have the experience to be able to figure you out for themselves, and in doing so expect to make the sort of discoveries that took years of testing and hospital stays to understand. Why?

Please accept that it really is as complicated as it looks. 

Follow this journey on Trying to Get a Life.

Originally published: June 30, 2016
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