My life has a lot of good in it, and although I have a chronic, incurable illness, I’m a happy person. Like many of us, I deal with various fears and anxieties related to my medical condition. This post is about a particular fear I struggle with, where it comes from, and how I’m trying to overcome it.
For me, being hospitalized is one of my greatest fears, right up there with being on TPN again, even more than spiders (it’s a phobia, okay? Don’t judge!). The reason for my fear is because I’ve been hospitalized many times and every time it’s been horrible. Also, I’ve had a few experiences where I’ve gone to a doctor’s appointment and then was unexpectedly admitted, which has made me afraid to see a doctor when I’m very sick and my nutritional intake is in question.
So what about the hospital do I find so horrible? When I’m there I feel like I have no control over anything, which is partly mental but also very true. Most of us who have been hospitalized know why it feels that way — you’re tied to an IV pole, so your motion and mobility are decreased, and you can’t even change your clothes or shower without asking for someone to unhook you. The environment is so loud that it’s hard to rest, and if you’re unlucky enough to share a room there’s no privacy — and sharing a room with a stranger is enough to throw me into a state of panic.
Also, the nurses are so busy that you only get medication, food and water they have time to bring them, and if you’re like me and take some medications on as needed basis, that can be very frustrating. You can’t just ask for an Advil or Colace if you need an extra — a doctor has to approve it, or reach out to one of your existing doctors, which can take days. And you only get to see the doctor for about 15 minutes per day, on their schedule, usually with a herd of residents and med students, which can make you feel like an animal in the zoo. The rest of the time you’re just waiting, with no way of knowing what’s going on, when you’ll see the doctor or have a test, or when you’ll be released. When they finally are ready to release you, it takes almost an entire day, just waiting for paperwork and doctor’s signature. I’ve had them keep me another day just because they didn’t have time to release me.
I’m a person of action – I feel better when I’m active and when I’m in charge of what’s happening to me. Feeling helpless and out of control is one of the hardest things for me to handle, and I tend to go to pieces. After my last two hospitalizations when I ended up there for many more days than I expected (and had to go through some very unpleasant procedures), I’ve dealt with severe hospital-related anxiety. I’ve talked to enough people with similar problems to know that I’m not alone in this. I’m still working on it with my psychiatrist and my husband but I don’t have an easy answer for how to resolve this issue. I’ve gotten better at managing my frustration and anxiety when circumstances are out of my control, but it’s still quite a challenge.
I know it’s very likely that I’ll end up in the hospital again, so I’ve thought a lot about how to survive when it happens and how to make hospital stays as pleasant as possible. I make sure my doctors and hospitals have all of my information and medications updated, including as-needed doses so there won’t be any confusion (this is one of the major sources of panic — not being able to get my medication — as I have had a problem with that during almost every hospital stay). I work with my doctors to keep my health as stable as possible so I can stay out of the hospital. But if I do need to be admitted, although it will be unpleasant, I know I can get through it. I always do.