I think I am devastated. Well, that is a bit over dramatic. Maybe I am pissed-off? No. Frustrated? Maybe. I think I’m just sad, tired and done. I’m really not surprised. I’m really not even angry. I feel a bit like a scolded child, but this too shall pass … so what happened?
I was asked to stop discussing fibromyalgia related topics in certain company. I was told it was just ‘too much’. I was stunned! I was shocked! What had I done wrong? But maybe for them, it was, just too much. Too overwhelming, seemingly, self-centered.
I wanted a certain life but was given another. Although I have had fibromyalgia for 20 years, I constantly research the latest information. I share what I learn about this disease. I support others with chronic illnesses and try to offer alternative coping skills to those who are having a hard time. The part that baffles me is that I can’t seem to reach certain people in my life. I can’t get them to understand what I want them to know. I know how difficult it is to explain this disease and that understanding it is even harder but I believed I was advocating for awareness and my message was being heard. I thought I was making headway, but to my surprise, I was only creating a much bigger divide.
I held a mirror up to my face the other day and asked myself this question, “Why were you asked to stop talking about fibromyalgia?” (I must mention, as I looked at myself in that mirror, all I saw was a confused lady looking back at me.) I spent a few days reviewing my conversations over the last few months. Although I was in a teaching and sharing mode, releasing a book that I had co-written, I believe I may have talked the topic of fibromyalgia to death! I believe I probably was just ‘too much’. What I thought would be helpful, inspiring, and interesting was obviously not.
The bottom line is this, I don’t get to choose when it’s ‘too much’ for me to deal with, I have to deal with it every single damn day. I have a disease. But others in my life do get to choose. I can deliver information but I can not control how others think, react, or receive information. I have learned a valuable lesson. I will always be aware of this. I will put parameters in place. I need to revisit the art of conversation, (My ill-tempered companion.) Talking about my disease is not always a welcomed topic. That is the beauty of a life without chronic illness, you get to choose whether to hear about an illness or not. You get to say, stop. I will respect that.