Last week I had an unfortunate encounter with a nasty viral infection. I spent the better part of two days with my head pounding, my body aching, and a fever over 100°F. Luckily, feeling like crap for a couple days was as bad as it got, the virus ran its course, and I was able to recover without a hospital stay. This 48 hours of feeling terribly made a much more lasting impression on me however, by helping me realize something about myself, my life, and my place in the world. It helped me understand the complex set of emotions I feel as a mature, adult man, when people get overly concerned about my health due to my disability. These feelings form two groups that are total opposites, one being positive and the other negative, which is why they are so confusing when I feel them all at once. Since there are a lot of emotions to discuss, and there is no way I could adequately address them all in one post, I am going to discuss the negative feelings today and follow up with the positive feelings in part 2 of this series (I like to get the bad news out of the way first).
I woke up in the morning, and I felt like my head was the size of a beach ball from all of the sinus pressure, but I thought that once I got up and moving that my sinuses would drain, and I would feel fine. After only an hour up in my wheelchair though, not only was my sinus pressure no better, but I had gotten a terrible headache, had body aches all over, and was sweating like a sinner on judgment day. I knew that something was not right, so I just rested the remainder of the day, tried to sweat it out, and drank as many fluids as I could. I was hopeful that by catching it early and getting on top of things that when I woke up the next morning, I would feel at least somewhat better. Unfortunately however, this was not the case. When I awoke the following day, I felt the same, if not worse. I continued to tough it out, and let my immune system try to fight off whatever was wreaking havoc on me, but when evening rolled around and I still felt awful, I decided that I should go get checked out in the emergency room just to be safe. The doctor in the ER was great and ran blood work, urine analysis, and even got a CT scan of my head and chest looking for infection, and, surprisingly enough, for probably the first time ever on paper I was completely healthy. This was good news, as it meant that it was probably just a rhinovirus, and that I would have to just let it run its course. He sent me home with some antibiotics just to be safe, and I woke up the next morning feeling quite a bit better.
Whenever I start to feel really sick, obviously I let my nurses know. They in turn notify my supervisory nurse that oversees them, so that if I would start to feel worse and need to go to the ER, she would know why. This is all fine, as I understand that my medical care providers need to be kept aware of my status. Over the first 24 hours of this latest bout with illness though, I felt like I was bombarded with calls and people from the homecare agency telling me that I was really sick and needed to go to the ER. The way they spoke to me, and each other, made me feel like they felt I was unable to make good decisions about my health. I felt like I was being treated like I was about 5 years old, and I needed someone to tell me what to do. This really bothered me, because I know that any able-bodied, mature 27 year old would not get the same treatment, and getting treated differently due to my disability is a hot button issue with me. As a result, I am not proud to admit that I was a little short with some of these individuals, and while I could make the excuse that it was because I was sick, that would just be a cop out.
Be assured, I completely understand that when these people come to give me “advice” about my health, that they all have my best interest in mind and care about me. I am similarly aware that the fact that any small illness can quickly become life threatening to me, makes for a very stressful situation for everyone involved. I also know that the whole reason I have nurses is to make sure that I am as healthy as possible, and that I should respect their opinions as medical professionals. I am completely aware of all of this, and I do respect and welcome their opinions in regards to my health however, I still want to be left to make my own decisions after hearing their opinions. 95% of the time my nurses do an incredible job of letting me make my own decisions and live my own life, but it seems like sometimes when I get really sick that they lose sight of the fact that I am a grown man who can make good choices regarding his well-being. When this happens, and they start pressuring me to make a certain decision, I feel like I am losing control over my life. Losing my sense of autonomy over my own health brings forth feelings of anger and frustration that in turn influence my decisions from then on.
The limited control I have over my life is one of the things I value most, and as a result I have a very hard time with being told what to do when it comes to things like my health. As more people come at me with their thoughts on what I should do when I get sick, the feeling that my control and independence is being taken away becomes stronger and stronger. So, being the stubborn person I am, in response to these growing feelings I start digging in my heels and sticking to my course of action as a response to being told what to do. These feelings are even powerful enough that I have found myself wanting to change my mind and agree with other’s point of view, but I don’t because at the same time I feel like this would be giving up some of my control over my life. Agreeing with their perspective and doing what they think is best will make it seem as if they have made the decision, so I feel like I have to choose between my autonomy and my health. Since my autonomy is so important to me, I will continue to make a choice I don’t agree with and know is not in my best interest regarding my physical well-being, just to keep my sense of independence.
This incredibly difficult choice between my autonomy and my health puts me in a quite tough, and potentially dangerous, situation. Since any unnecessary delay in making the best medical decisions can be life-threatening for me, these negative emotions are a big problem, as they cause me to make choices that are not always in the best interest of my health. Since I need and want my nurses to give me their opinions and share their medical expertise, it is imperative to find a way to work through these feelings when they occur. By now being aware that I am even experiencing these powerful emotions, we have taken the first step in this process. In the next part of this series, you will learn about the positive feelings I have in conjunction with these negative ones, which play a large part in the next step to working through the impact of these negative emotions.