Honesty and Living with Chronic Illness
January 1st, 2009 -- Posted in Doctors Visit, Life with Lupus, self esteem | 15 Comments »I have found myself doing a lot of soul searching so to speak lately. I don’t know if it’s the New Year or if it’s just that getting older, either way it’s where I am in my life. A few years ago when my health got worse, I thought that my life had ended because of lupus and chronic pain amongst other health issues. I was very angry because I was sick. I had left a really bad situation in my life and looked forward to new things, but I got knocked down by chronic illness. It was not the life I signed up for, but then again what part of my life has been what I signed up for. Little by little, I have learned that really it was my minds way of coping with the many obstacles of living with a chronic illness. I’ve had to learn a lot of coping skills.
So many people that I’ve talked to either have no idea what lupus is or act like they know what it is and really don’t know. I am the kind of person that I would rather you ask me what’s going on, then having someone stare at me and wonder what was wrong with me. Recently, I was with my family at an appointment and there were 3 kids sitting there. One was a little boy about 8 and the 2 girls were about 8 to 10 years old. The kids were with their rather stern Grandmother. From what I observed the kids lived with her. This particular day I was in my wheelchair as it was one of my bad days. The little boy was on the hyper side to me. His Grandmother was constantly on him and one of the little girls like she was a drill sergeant in my opinion. Kids will be kids. The little boy asked me “Why are you in a wheelchair?” I was quick to respond because I had thoughts of Grandma coming unglued at the boy. Rather then get into I have lupus; I explained to the little boy that my legs are weak at times when I walk. His sibling said under her breath “You don’t ask people that kind of thing.” I told the young girl its okay he asked the question. I would rather someone ask me what’s wrong then to stare at me and wonder what was wrong with me. “
It’s brought about a lot of questions in my mind. “Does other people mind if someone asks what’s wrong with them or rather have someone simply stare at them?” I prefer to talk about my illness, rather then someone staring at me like I’ve got the plague, even though I call lupus the plague. I decided a long time ago that I would be open about my struggles to help others understand chronic illness. So it brings me back to where I started about getting honest with myself. I have learned in the last few years that I needed to be honest with myself. I have found that it was easier for me to stay in that depressed mode rather then pull myself up. At the moment I am trying to pull myself up from depression. In 2008 I made some progress in my recovery, but I had to come to the point of accepting I may have to take depression medication. I have a tendency to not do things out fear of being in pain. If you’ve ever been in pain for any length of time you will understand what I mean. So this year I need to learn to pace myself because when I feel good I tend to want to get everything done real quick and then I am down for 2 or more day. So really I can’t win because I want to be “normal”, what ever that may be. So this year I am going to work on pacing myself and not being so afraid of being in pain. If I pace myself maybe I will have more good then bad days. So I leave this post with a couple of questions.
1. “Would you rather someone ask what was wrong with you or would you rather someone stare at you, or would you rather they turn their head?”
2. How did you get honest with yourself and your life chronic illness or not?
