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When We Get the Big News: diagnosis delivery

October 7, 2013

Learning of a major diagnosis is a pivotal moment in a person’s life. On TV shows (and often in real life), cancer is diagnosed in a private physician office full of natural light, tastefully minimalist art, and plants. In a similar vein, most ICU, trauma, and Emerg units have private “meeting rooms,” where families and patients can be delivered sensitive news discretely.

By contrast, I was diagnosed with diabetes in a 30-second phone call. And then again by a triage nurse. And then by an ER physician (who assured me I had type 2).

It looked something like this (told in the 3rd person for dramatic effect):

April-May 2010: Sarah walks around for four weeks with blurry vision, acute thirst, extreme dizziness, disastrous fatigue and noticeable weight loss despite a frantic diet of ice cream, rice crispy treats, and fresh-squeezed carrot/orange juice.

May 13, 2010: Sarah finally goes to see her family doctor, after several weeks of telling herself it was all just a “somatic response to being happy.” Finally prepared to hear the worst – “it looks like you might have MS or a brain tumour” – Sarah’s family doctor utters the most-unsexy of disease names: diabetes. (WTF? Says Sarah to herself, in between gasping for breath and reaching for a water bottle to quench the unending thirst.) Doctor draws blood (no over-the-counter test strips available at this clinic), sends it off by express-courier for a BG test (200 dollars for the courier…a foreshadow of expenses to come). Sarah stumbles home, calls her boyfriend to tell him she might be diabetic.

May 14, 2010, 7:30am: Sarah wakes up to a phone call from the doctor’s office. “You have diabetes,” the receptionist urgently tells her. “Don’t do anything, just head straight to the ER. Tell them your blood sugar is 28.5.” Sarah does as she’s told. Calls a cab, and then her mum, asking if she can come along. While in the cab, she also calls work: “apparently I have diabetes, and I have to go to the ER. I’m not sure how long I’ll be there, but maybe don’t expect me at work for a little while. I’ll call you when they let me out.”

8am: Intake nurse finger-sticks Sarah’s finger for the first time (the Virgin Poke). BG is 16.4. “You have diabetes,” she informs Sarah. Okay.

8:30am: Sarah is now in an ER bed and hooked up to an IV drip. Friendly ER doc stops by: “you have diabetes.” Okay. “But luckily it looks like the kind you can treat with pills.” Sarah is momentarily relieved, because yesterday her thought process was: “it’s okay if I have diabetes, just so long as it’s not the kind where I have to give shots. Cuz I just can’t do that.”

10am: Sarah gets her first insulin shot. The nurse says, “don’t worry about having diabetes. You’ll get used to it.”

6pm: Sarah asks the new nurse on-shift whether she has type 1 or type 2. Nurse says, “hmm, probably type 1.” This becomes the new question Sarah asks every practitioner who treats her. The votes for type 1 start to chalk up. Type 2 is losing the race.

May 15, 2010 Midnight: Sarah wakes up in the night by another ER nurse, coming to draw blood for the thousandth time. Sarah tries falling back asleep. Fails. Starts instinctively to sing quietly to herself, upon which she feels the tears well up. “Can’t cry here,” an intuitive voice warns her, “it’s not safe.” Sarah finally falls asleep, quietly acknowledging the emotional magnitude of the past 36 hrs, and the sheer lack of any resources to help her process it here in the ER.

I wish I had a more elegant moment of diagnosis. I wish it wasn’t such a frantic whirlwind. I wish someone, sometime had stopped and asked me how I felt. I wish I’d been taken aside somewhere, explained what was happening to me and what the longer term implications would be. I wish the ER social worker had stopped by my bed to pay me a visit. I wish that hospital staff had agreed on a unified, consistent message to send me about my health.

That didn’t happen. I stayed numb for awhile. In the days following, the boyfriend found ways to coax some tears out of me, and I cried once to my mom the day I moved back into my apartment. Other than that, it was jab jab jab, test test test, learn learn learn, cope cope cope.

The real tears came later.

I have found ways to reclaim the dignity missing from that week. It hasn’t been easy, and the process has been messy. Maybe that’s the way it needs to be. At least I understand now how profoundly my life was changed by those series of half-informed conversations. If only ER health care providers had the time, training, and mandate, to truly understand that impact too.

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2 Comments leave one →
  1. October 7, 2013 7:13 pm

    I’m so sorry that happened to you. What a horrid reception from the medical community.

    My story is odd, too, because I never went into the hospital, and I was also misdiagnosed as a T2 when I probably had something more like LADA. My mom had me go in for a blood test because my cousin, 4 at the time, had presented all symptoms and had been diagnosed quickly (his mother is a psychiatrist, so had a medical background and acted swiftly). I had no symptoms and the doctor would have refused to test me but mom was adamant, so he did it to shut her up. I remember getting a Caramilk bar as a reward for getting blood drawn. I was 12. That night when we came home, there was a message from the doctor’s office: “Call us.” Ominous-sounding. I think it was Friday night. I convinced myself it was nothing after staying up with nerves. I slept in that morning and woke up to my mom trying very hard to gently keep it together. “You have diabetes, honey,” she said. My reading was 27. I had zero symptoms, so they assumed I was type 2. I remember thinking vaguely that “honey” was an ironic term to use. I said, “oh,” asked for a minute to process, and cried alone in my room for a little bit, but I had no idea what it meant, really.

    It was my best friend’s birthday party that day and I asked if I could still go, and my parents, probably attempting to preserve normalcy, agreed. The rest of the day was a blur. I remember being reserved and looking down a lot, not wanting to cry but kind of wanting to draw attention to myself and get sympathy, but realizing that it would be a dick move on my friend’s birthday, so I decided I wouldn’t tell anyone. When I was offered cake, I said, voice breaking a little, “I don’t think I can have that anymore.” Bear in mind that I was literally diagnosed, given no information, and sent off to a children’s birthday party. It’s pretty funny that now I associate said friend’s birthday with my diaversary, though of course I don’t hold it against him. I can’t remember if I told anyone why I couldn’t have cake, because I’m sure people asked. I probably did. I sang happy birthday to Chris and wondered if I was going to have another birthday, or how many I had left. I’m not sure if we talked about it as a family when I came home. I dealt with the emotional fallout myself because I refused to let my parents see me cry. This lasted for many years. THREE YEARS LATER, after diet, exercise and pills that never worked, I gave myself my first shot of insulin. Who knows how much damage those years did.

    Anyway, I’m sure you didn’t write that so that I could get all BLAH BLAH BLAH HERE’S MY STORY – I imagine that’s just as much of a dick move as trying to get sympathy at your best friend’s birthday party. Your piece just touched a nerve and made me write this out.

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