Dear Hospital Staff, From Your Chronically Sick Patients
Dear Hospital Staff,
We are the chronically sick. We come to you in the middle of our worst flare-ups. We wheel or limp into the ER with injured joints, muscles, or bones due to disorders many of us have been battling since the second we learned as babies to walk and talk. We arrive flushed and weak with fevers of unknown origins. We are doubled over with unimaginable abdominal pain. We come by ambulance after having allergic reactions that leave us gasping for air. We tried to take a walk, and we fainted for the fifth time this week.
We come to you with complications:
Of previous surgeries, side effects of multiple medications, and years spent occupying bodies that are fighting never-ending battles with illnesses for which there are no cure.
We are different than your other patients.
We are not here because we broke an arm playing football. We don’t have a virus or the flu.
We won’t leave here cured. Some of us, heartbreakingly enough, won’t leave here at all.
We aren’t easy to deal with. There is nothing black and white or cut and dry about our bodies. We are a confusing array of symptoms and issues that nobody can quite explain or fix.
We simply have to live with it.
We aren’t know-it-alls. Please don’t be offended if we correct you, or if we hand you a large, messy binder filled with years of medical records that tell a lengthy, sad story. We have been living in our bodies since the day that we were born. You are holding lab values in your hands, but we have years and years of experience with our illnesses.
We know when something is wrong. Please listen to us.
We bring our favorite pillows, our coziest blankets. We stare at laptops and listen to our MP3 players. The truth is — this is a routine that’s part of our lives, so we have been forced to find little things to help us survive these hospital visits. Just because we are trying to distract ourselves does not mean we are not suffering.
We are laying in the ER, listening to the beeping of a hundred machines. Our heads are throbbing, we are hot, flushed. We are dizzy, lightheaded. We are in severe pain. And we are terrified of what is next. We are tired of living like this. We want to be home. We can barely make plans — to visit with friends, to spend time with our children, to see a movie, to go to the park, to get married — because we never know which days we will be too sick to get out of bed.
We never get used to the agonizing pain of IVs and needles being jammed into our sore, overused veins. We never get any less scared of seeing other patients on stretchers who are like us, or worse than us — who are screaming out in pain.
It doesn’t get any easier. Chronic illness is not like breaking in new shoes or riding a bike. It never feels comfortable, warm, or familiar. Practice and experience doesn’t necessarily make us braver, only more afraid for our futures.
When you meet us, you won’t relate to us. We are often on Medicaid, on Supplemental Security Income. Many of us can’t work. Our dreams have had to be pushed aside.
But we are people who can’t run, so we walk. We are people who can’t walk, so we use wheelchairs. We are people who sometimes cannot get out of bed, but we still manage to smile. We let our hearts and our positive attitudes shine, because in the end, that is all we have.
You are in your new business suit. We are in a flimsy hospital gown. You speak with a strong, confident voice. We are barely a whisper. You laugh loudly with your coworkers in the hallway. We softly cry ourselves to sleep, because we are alone.
Did you know that people stop calling? People stop sending cards or flowers or balloons. People stop, because this is everyday life for us, and who could keep up with the rate of which our illnesses knock us off our feet? Who knows what to tell us when we are in the hospital for the fifth, 20th, 100th time this year? After awhile, people stop.
We read books to pass time. We might pray to whoever we believe is in the sky looking down on us. We never lose hope. We never stop fighting — what other choice do we have?
Please be kind to us. Please be patient with us. If you hear us sobbing behind the ER curtain, it isn’t because we’re dramatic or emotionally unstable. It’s because we are sad. We are sad, because we don’t want to be here. We don’t want to be poked with needles. We don’t want to have to take medications that make us feel like zombies, that put us to sleep. We don’t want to lay in MRI and CT scan machines.
We don’t want to hear any more bad news. We don’t want to sleep in uncomfortable hospital beds with our achy, painful joints. We don’t want to be woken up every half hour by nurses. We are in pain. We are sleep-deprived. We are physically and emotionally exhausted.
We don’t want to be sick.
So, do what you can for us. Don’t be frustrated by the complex nature of our health. Don’t make assumptions about us.
Remember that this isn’t our first visit, and it won’t be our last.
This is our life. It may not look similar to yours. You may not relate to our journey, but treat us with love and compassion.
We know your job isn’t easy, but neither is ours.
The Chronically Sick