When People Think I’m Healthier Because I’m Not in the Hospital

Everyone always tells me I must be doing well with my health because I haven’t been an inpatient in the hospital for a while. Well, I got to thinking about it, and that’s not true. A hospital isn’t just the building on some street where you go and stay with nurses and doctors. It isn’t just the procedure rooms and closed doors. For me, the hospital is wherever I am.

An IV bag hanging from the coat hook of Bri's car
An IV bag hanging from the coat hook of Bri’s car

My house is my hospital. My dorm room is my hospital. The local shopping mall is my hospital. And right now, my car is my hospital.

I’m on a 13-hour car ride, so my car is filled with all the equipment I would have in the hospital. A feeding pump, elemental formula, IV pump and bags of saline. Medications. Syringes, needles, a wheelchair. All issued by my home hospital in order to keep me alive.

An IV bag hangs from the coat hook in front of the window. My feeding pump sits on the floor. Both whirring away, artificially sustaining my body. My meds are in a tote on the floor, stocked with syringes to help me measure and take them.

As for the nurses and doctors I would get in a hospital, those jobs have been pushed onto me. I can access my central line with an inch-long needle without flinching, run sterile procedures, set up tube feeds and administer medications. All jobs of a nurse. I can also diagnose fevers, pains and other issues that come with my disease. I’ve read medical textbooks, done countless hours of research and can speak in so many acronyms that I know more about my disease than an average doctor.

So in short, if I’m not in the hospital, I’m not always any healthier than I am when I am admitted. In the last four years, I have became highly trained in what to do when something or everything goes wrong.

Bri smiling in her car next to an IV bag hanging in front of the window
Bri smiling in her car next to an IV bag hanging in front of the window

Editor’s note: This is based on one person’s experience and should not be taken as medical advice.

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