i've only told three patients that i have lupus.
normally, i don't tell.
because my experience of illness is not their experience of illness.
because the things that have given me hope aren't necessarily what will give them hope.
because my trajectory is not their trajectory.
because my journey cannot be extrapolated to their journey.
but sometimes, you need to know you are not alone.
sometimes you need someone else to say "me too."
so on three occasions, i have shared that understanding.
she thought it was just an ulcer, the nausea she'd been experiencing. it was metastatic cancer. she started her chemo in the hospital. what she wanted to know: when will my hair fall out?
she brought it up a few days later, looking sad. i'm waiting for my hair to start falling out. i could tell she wanted to not be upset. when you are diagnosed with metastatic cancer, it seems petty to care about cosmetics. except that it matters. it is a loss to grieve. it changes the way the world sees you, because now they can your sickness. the disease that was visible only to microscopes and CT scanners is now on display for everyone. i lost half my hair seven years ago when i got sick, i told her. don't downplay your grief. it is real.
apparently he usually refused to see med students, but i guess that day he lost his fight, so i picked up his chart and went in.
his recent medical course had been tenuous. recurrent infections and hospitalizations, despite how adherent he had been to his HIV medicines. he now was contemplating taking a leave of absence from work. his worries about this were endless: that his co-workers would find out his diagnosis; that he would lose his job; that he would never be well enough to go back. he started to cry.
i took a deep breath. i had to take a year off of school because of sickness. i wasn't sure i would get better either or that i would be able to go back. it was a long hard year. i don't know what it will be like for you if you take time off or if you will get better or what will happen with your job. but i know life won't be over for you and that you'll come through.
they tell me i have lupus, he said. i looked it up online. there are two kinds. i have the systemic kind. that's the bad kind. what happens to me from here? then his eyes filled with tears.
only my eyes were visible above the mask covering my face; they too filled with tears. i have lupus too, i confessed.
he seemed stunned. he commented on how i seemed so functional.
i've been really sick before, i get really sick sometimes. then sometimes i'm better and i cram life into those days and weeks and months. i don't know what this illness will be like for you, but i do know that it isn't a death sentence and that your life isn't over. the waiting and hoping to feel well and the uncertainty of it all is hard, but you are strong. you will come through this.
he is.
normally, i don't tell.
because my experience of illness is not their experience of illness.
because the things that have given me hope aren't necessarily what will give them hope.
because my trajectory is not their trajectory.
because my journey cannot be extrapolated to their journey.
but sometimes, you need to know you are not alone.
sometimes you need someone else to say "me too."
so on three occasions, i have shared that understanding.
~~~
she thought it was just an ulcer, the nausea she'd been experiencing. it was metastatic cancer. she started her chemo in the hospital. what she wanted to know: when will my hair fall out?
she brought it up a few days later, looking sad. i'm waiting for my hair to start falling out. i could tell she wanted to not be upset. when you are diagnosed with metastatic cancer, it seems petty to care about cosmetics. except that it matters. it is a loss to grieve. it changes the way the world sees you, because now they can your sickness. the disease that was visible only to microscopes and CT scanners is now on display for everyone. i lost half my hair seven years ago when i got sick, i told her. don't downplay your grief. it is real.
~~~
apparently he usually refused to see med students, but i guess that day he lost his fight, so i picked up his chart and went in.
his recent medical course had been tenuous. recurrent infections and hospitalizations, despite how adherent he had been to his HIV medicines. he now was contemplating taking a leave of absence from work. his worries about this were endless: that his co-workers would find out his diagnosis; that he would lose his job; that he would never be well enough to go back. he started to cry.
i took a deep breath. i had to take a year off of school because of sickness. i wasn't sure i would get better either or that i would be able to go back. it was a long hard year. i don't know what it will be like for you if you take time off or if you will get better or what will happen with your job. but i know life won't be over for you and that you'll come through.
~~~
his thin frame was covered up to his chin with stiff hospital blankets.
they tell me i have lupus, he said. i looked it up online. there are two kinds. i have the systemic kind. that's the bad kind. what happens to me from here? then his eyes filled with tears.
only my eyes were visible above the mask covering my face; they too filled with tears. i have lupus too, i confessed.
he seemed stunned. he commented on how i seemed so functional.
i've been really sick before, i get really sick sometimes. then sometimes i'm better and i cram life into those days and weeks and months. i don't know what this illness will be like for you, but i do know that it isn't a death sentence and that your life isn't over. the waiting and hoping to feel well and the uncertainty of it all is hard, but you are strong. you will come through this.
he is.
