Hospitals and Control

Home. I love being home. Over the past several weeks I've been reflecting on my recent hospital stays. When I think about my time in the hospital my mind quickly jumps to my least favorite part of the hospital.... not being in control. I hate that I am not in control of my daily meds. I hate that when a symptom starts up I can't just decide to grab a medicine. I hate not knowing when the doctor is going to show up or when a test will be. I hate that almost all decisions have to be approved by my doctor.

Over the past couple of days I have wondered, "with all the hard parts of the hospital, why is control being taken away the worst to me?". Then it hit me, it's because chronic illness has stolen almost all the control I once had in my life. It took my ability to plan my days, to trust my body, and so much more. So I crave control over what I can. I can't control my body, but I can control how I care for it.

When a healthy person suffers an accident or illness and ends up in the hospital, most of the time he/she isn’t used to his/her days revolving around his/her health and because of this having someone else handle everything isn’t a problem. When a chronically ill person ends up in the hospital, his/her days often revolve around his/her health. So suddenly having other people be in control of it all is terrifying. Those of us with chronic illness know our meds, we know how to handle certain symptoms because we have to. So to suddenly not have the ability to care for our bodies in the way we know best is really hard.

When I was in the hospital I often saw a look of confusion or even annoyance when I would make certain med requests, or requested that they page the doctor, or asked questions about which meds were ordered because the healthcare staff wasn’t used to my type of questions. Most people aren’t “obsessive” over their health, those with chronic illness don’t really have the choice not to be.

If you are a doctor or nurse and have a patient who constantly questions everything or makes specific requests… Here is what I want you to know. There is a good chance your patient is that way because he/she has had to become that way. He/She doesn’t have the luxury of taking a back seat with his/her health. She/He has to fight everyday to be able to function. Your patient isn’t trying to be difficult, he/she just suddenly had the last ounce of control taken from him/her when he/she entered the hospital. So please be patient, please explain everything, and please don’t take the questions as questions against your judgment. We trust you, we just have had to take control over our health to survive.