I have just returned from Arizona where my husband and I are looking for a new place to spend the next chapter of our lives. It is time for us to leave California for any number of reasons. That is why my blog site has been neglected for a short time. I have thought about all of you every day and the struggles that we go through together. It is comforting to know that all of you around the world are there with me and I with you as we enjoy the moments every day has to offer. A long distance move creates a measure of stress, but I luckily enjoy change so I will take each day as it comes one at a time.
While I was traveling to, from and around Arizona I was thinking about how all of us have been reduced to being patients in our healthcare systems. I'm sure all of you have a feel for what that means and I believe that this feeling is universal regardless of which country you live in. Becoming a patient automatically puts us in a nondescript role by our medical communities. We lose our identity and become an illness that is dissected into body parts lacking a personal history, an identity, and the essence of who we are. There is nothing more dehuminizing than being reduced to a diagnosis that fails to acknowledge our humanity and ignores our accomplishments and our life story.
Have you lost yourself and your remarkable life story in your process of becoming ill with fibromyalgia? We are unable to do all the activities that we did prior to getting sick, but does that mean the begining of our life story no longer exists. Every day of our lives defines who we are and is embedded in every fiber of our body and spirit. We have never lost those earlier years . . . they are still a part of us. It is easy to lose sight of our identity when others around us, including the medical community, no longer see us. This is probably one of our greatest challenges -- protecting our identity. There are so many that try to take that away from us! Have you lost yourself and your identity because people no longer see you and the essence of who you are? Do you even remember your life story anymore, because it is a distant memory? Do you remember who you were back then? I want to tell you that this is still who you are.
It's way past time to resurrect your life story and reintegrate that part of yourself that others wish to minimize and forget. You still are a vital human being regardless of the challenges you have faced and regardless of your illness. So what is your life story? Do you remember? Revive your dignity and sense of self by remembering your life story. Be your own advocate to stop medical personnel from dehumanizing you and reducing you to a diagnosis. Recently I challenged the "nurse" in the rheumatologist's office for talking down to me. During the next appointment with the rheumatologist I plan to have a frank discussion with the "nurse" about her treatment of patients. I have always been a fierce patient advocate and it is ironic that I find myself in the position of being a patient and in the position of having to advocate for myself, because there is no one else to do that for me. We are all intelligent people that deserve to be respected as human beings that have a life history that is so much more than the diagnosis that we have been given. It is critical to our identity and our well being to broadcast that we are accomplished people that have an illness and not that we are an illness that lacks a story or humanity.
So how do we advocate for ourselves to make sure our life story and the meaning that has given to our lives is not lost? First of all, we are the healthcare consumers and that puts us in the position of being the customer. There are still doctors and nurses around that don't understand that concept and we must be able to communicate that to them and inform them of the expectations we have for heathcare delivery. It is important that we expect to be treated with dignity and respect, and when that standard isn't met, we need to call people out and demand that respect. If people fail to treat you with dignity and respect even after confronting their behavior, it's a sign that it is time to change medical providers and/or friends . . . that also applies to family members too. You are respected as much as you respect yourself. Give yourself the respect you deserve and demand that from others around you. Don't be shy about advocating for yourself and about sharing your life story and the accomplishments in your life. You still are that same person. You have just entered a new chapter in your life and that's okay. One thing that we can count on for sure is that our life and the world around us is every changing and evolving. Embrace that change and meet the challenges that change may present, but never lose yourself in the process. When you tell your story to others and share your life accomplishments it gives people the opportunity to see you again. We become less invisible when we expect to be visible.
Do you see you? If you do, there is hope that others will too. I haven't met you yet, but I want you to know that I truly see you and all that you are. You are a complex human being with a rich history that makes up the fabric of your life and your being. I see you and I know you see me too. Let's make sure that others see us. We are not invisible along with our invisible illness. Blessings to you and as you celebrate your life story and the essence that is you every day!