It is scary for the patient and we are constantly going into uncharted territory, even if it 's the same building, with people who have the power to heal us, hurt us, take advantage of us, or make a mistake and severely damage our health or kill us. Many of us have PTSD from living what I call the "hospital life" literally since birth. We are stuck in a bed with tubes, wires, and masks, repeatedly getting stuck with needles and wheeled to different tests with giant machines, alone, in rooms, with strangers. This does not get easier for most of us just because we have been through it for 20, 30, or 40 years. It doesn't matter if we were here last week or last month, every single hospital experience is different since we consistently get different people.
Those people make our experiences at hospitals and we all have a millions stories to tell about good and bad hospital staff who have both helped us and severely hurt us. So again, thank you to those who make it your personal mission to help us, kindly. We know you are going through your own stuff too, yet smiling through your pain just like we do. We are in this together. Caring for Adults is a team effort. Patient and staff. As long as you allow it and don't treat us like we are beneath you or a burden because we are sick.
We can truly create change if we all work as a team. Consistent, recurrent patients are a part of your team just as much as the staff, except in a different way of course. Afterall, we all need each other to survive, right? You need us to pay your bills and we need you to keep us alive. So lets try to have some fun while we all try to keep our heads above water. Especially during the holidays.
Below are a few suggestions for hospital staff to help us have a more positive stay:
If you get a few extra minutes in between patients - Ask us questions, even if we can't talk we can shake our heads. Make jokes, even if it hurts our hearts or lungs to laugh or smile, you are bringing joy to our hearts. Hold our hands and pray with us even if we can't speak. Brush our hair if it's a mess (it always is). Read us some funny memes or a page from a book we have. Color with us for a minute if we have our adult coloring book or crayons lying around. We will probably keep it for like 10 years because of how much it means to us for medical staff to be nice and caring to adults. Draw silly faces on the white board or write your favorite inspirational quote, or word. It's the only thing we can look at anyway, besides the TV. Sneak us some extra ice chips. Surprise us with a fresh heated blanket. That's the best! Be silly, even if you feel stupid, trust me, you don't look stupid to us, you look like you are a fun awesome person and we wish we could get up and be silly with you.
Above all: Listen to us and take us seriously.
Trust me, we don't want to be there. Please don't treat us as if we do.
Young adults with life threatening illnesses who "look healthy" are very real, alive, struggling with something we did NOT create, we are not exaggerating, and need your help to keep our organs going because we really would like to make it another year, at the very least.
"I know each hospital stay is not my last." - Brittany Foster