We all have a way that we think of ourselves. Growing up I was the smart one; as an adult I was the doctor who worked for a health care company and was pretty darn good at her job (at least I think I was). All of a sudden this “event” happens and I am out of work for four months on STD (short-term disability for those of you who think that STD stands for something else) and I am the sick one, the one on dialysis, the one who needs help taking care of herself and her kids. It really messes with your head. Having a chronic disease, or illness, or frankly anything that brings you into frequent contact with the health care system has a way of completely taking over who you are and, if you are not careful, defining much of how you think about yourself and how others think about you.
I realize part of this is my doing since I have been very open and transparent about my condition and my ups and downs. I am hopeful that others can learn from my experience since I inherently like to teach. In these days of HIPAA (the law that requires your doctor to have you sign a paper confirming that you have read their privacy policies,) it is much easier to keep medical issues private. My friends were very careful to do this on my behalf in the early days until I was able to make the choice to be open and public. So while I am glad that folks have benefited from my experience (I hope), I don’t want this experience to define who I am or what I am about. I hate being a patient since, to me at least, “being a patient” implies a lack of control and a sense of powerless-ness. I didn’t even realize I thought that until just this moment as I am writing this.
There are ways to communicate to and about people with an acute illness, chronic diseases or other major health care need. For example, my father is not a diabetic; he is a person with diabetes. Cancer survivors have many things that define them of which their history with cancer is only one aspect. It is very important that we remember this, both as friends and families, health care providers, payers, and fellow patients. Patients are people, and while in the acute stage your disease or illness may consume your life, once things are back to normal, even a new normal, I at least do get a little weary of people asking me “how ARE you,” like it is more than a perfunctory question. Not that the inquiry and sentiment is not appreciated, it is, and people have been SO wonderful, but it does make it hard to forget and feel normal.
Needing a transplant puts you in a different category since you need to publicize your story in hopes of finding a living donor. I spread my story far and wide looking for a donor. It was a numbers game –and I was a bit embarrassed at first since it seemed weak to me to be in this situation. I had so many friends (and family, although because of my condition they were not allowed to donate in case it was genetic) who volunteered but since the closer the match the better we wanted a large pool of potential donors. I will let Sarah talk about how it changes your identity to be willing to donate a kidney. To allow a surgeon to remove a part of you to give to someone else has to change how you think about yourself. It certainly changes how others think about you (although again I am biased). It really amazes me that not only my friends but acquaintances and perfect strangers were willing to donate to me. I think as a society for the most part we are incredibly generous to people in need. But that is a story for a different day. Happy Holidays everyone. To quote Margaret and Helen, I mean it. Really.