For as long as I can remember, I have been sick, never “normal.” I remember, as a child, my mother took me from doctor to doctor trying to figure out what was wrong with me because I never really felt healthy. The doctors always told my mother that I needed to eat better and take vitamins and my mother did the best she could to heed the doctors’ advice.
When I got older, I had many horrible winters where my muscles and my joints ached because of the cold weather. I also was sick all the time, not really sick, but sick enough that life was always difficult. In my preteen years, the doctors told my parents that my sickness had to be related to anxiety and then later in my teen years, I was told it was all in my head. This was too much for my mother who did not believe that it was in all my head so she gave up and hoped that whatever was wrong with me would somehow work itself out when I got older.
In my 20s, I battled the medical community alone trying to figure out what was wrong with me. Some doctors tried to diagnose my symptoms while others told me it was all my head. After my diagnosis two years ago, the first person I told was my mother. I remember the look in her eyes when I told her. It was a look of relief because if anyone believed in me, it was her. My mother and I have never seen eye-to-eye on anything, but she was the only person who really believed that my illness was not in my head. I remember her arguments with my doctors who insisted that I needed to see therapists and psychologists because there was no explanation to how I was feeling.
My mom, for all her flaws and all our disagreements, was the only one who understood how sick I was and that it wasn’t all in my head. My first marriage ended because my ex-husband never understood and I had many failed relationships and friendships because there were so many people in my life who never understood.
At some level, I have never known what “normal” is. I have never lived day without the reminder of my invisible conditions. Even today, with treatment and medication, I don’t feel so-called normal. I have a headache at least once a week and it usually lasts several days. I feel tired most of the time no matter how much sleep I get. The dizziness, weakness, and that feeling of “not feeling right” follow me everywhere, and the pain, of course, that is a whole different story.
For so-called “normal” people, there is this belief that if someone struggling with an invisible disease gets out bed everyday, then they are doing well. However, for someone who has never known “normal”, the belief that staying in my bed will somehow make me better means that I would never leave my bedroom and I would miss out on life. So, I get out of bed everyday despite how much of a struggle it can be, and I live my life, like every “normal person,” or anyone with an invisible condition, does.
As a person who does not know “normal,” there are times where I just want to live a normal life, but at the same time, I still want the people in my life to acknowledge my pain. I have never really known what “normal” is, and if anything, this is my normal. Just because I suffer from two invisible conditions doesn’t mean that my life has suddenly stopped. I walk alongside with my conditions and sometimes, they stop me or limit me, but they don’t dictate my life or my decisions.
Since my diagnosis, I went on to pursue my master’s degree despite my already busy life. I am always asked how I do it all. Many of the people who ask won’t even know that I have RA and FMS. Could you image the reaction if they knew that in addition to my already busy life, I suffer from two chronic pain conditions? Honestly, I have my moments where the pain, the fatigue and the exhaustion takes a toll on me and sometimes on my family. Those are the times where I turn into a raging mad woman. (That happens at least once a month.) The fact that my family is slowing learning to understand my conditions is the only saving Grace I have.
I may not know what “normal” is, but I know what my normal is. I suppose, if anything, my “normal” helps me make through everyday.