There are so many things that I have learned since my diagnoses but the one that stands out is this perception that I have to pretend to be well or that I am normal when it comes to my health. I do this in every aspect of my life, including my career and my family. Well, the pressure to appear to be well takes a toll on a person as I found out this weekend. What I found is that everyone wants a little piece of my time. The problem is that I don’t have the time to offer, and I am really upsetting people because of that.
As chronically ill patients, the biggest issue we have is not our health. It is the challenges and difficulties with relationships we have whether personal or professional. What I have learned from my own experiences and the experiences of others is that if you suffer from a chronic illness and/or chronic pain is that we want the one thing that we can’t have: understanding. We want others to know that how hard our lives are both physically and emotionally. What we find is that people who do not suffer from chronic illness don’t know what it is like so they can not offer the understanding we are seeking.
Sometimes, I find myself complaining out loud about how much I am hurting without realizing it, in particular when I need help and no one is helping. This weekend is all added up that I had to let my husband, my brother, my mother, and even my kids have it. My toddler woke up at 6 am and holding the salt shaker and pouring it onto my bed. So, I cleaned up his mess, put away the salt shaker, and laid down on the couch while he watched Nick Jr. Then, his dirty diaper was off and that was yet another situation for me to deal with, and it kept going on for the next three hours so by 9 am, I had a headache and a pot full of coffee in my stomach. There was also a second salt incident in between and someone sitting on the door of the open dishwasher. (I don’t know my toddler is obsessed with locating and dumping salt or sitting on the door of the open dishwasher. These two incidents weren’t the first.)
There was not a single joint in my body that was spared when I woke up yesterday morning and I continued to pay for it for the rest of the day. Meanwhile, my husband is snoring and when I asked for help, he complained how hard he works and that he should be entitled to sleep in on his day off. What a double standard! So, by noon, I probably let him have it three times. Then, my younger brother calls because he in town and needs me to take him a hundred different places. Then, my mom calls and needs me to take her places too. Meanwhile, I can barely make lunch for my kids and I am in a crappy mood. My ten year old is whining that his friends are riding their bikes to the park that is two miles away and he should be allowed to go. My home looked like Fort Knox even though I was cleaning from 7 am to 7 pm the day before. (Where are the booze and why did I quit smoking?)
By 2 pm, the day had taken a toll on me. My toddler was refusing to nap, my ten year old still complaining about going out with his friends, cleaning Fort Knox, my mom and brother calling every ten minutes, and my husband grumbling because I was complaining. Then, finally the tears came. I closed the door in my toddler’s room, sat behind it and starting crying. At that moment I realized that everyone wanted me to give them time that I did not have. When I calmed down, I told my ten year old to get ready and got my toddler dressed. I took them out to lunch (without the grumpy, needs his beauty sleep, husband), then to the bookstore, and to a few other places at a local outdoor strip mall. I called my brother and my mother told them that I was busy and they needed to leave me alone.
For whatever reason, my family thinks I am capable even when I tell them I am not. I am chronically ill and Rheumatoid Arthritis and fibromyalgia are a part of my daily life. I have a long time ignored the fact that there are people in my life, including family, who question whether I am really as sick as I say I am. Some think my problems are in my head and others think I am sick by choice to avoid having to do things like helping out and social events. Yesterday proved that ignoring the situation and the people doesn’t make the problem go away.
The pressure to appear healthy and well exists in all of our lives. Others expect us to somehow be “healthy” and “well” simply because they think we should be and because they are. I am tired of trying to please everyone and having my health pay. I am learning everyday the price that my health pays when I fall into the pressure of trying to appear well and healthy. I don’t want to pretend to be healthy and well; I want to be healthy and well.