I have reached a new appreciation of patients with a chronic disease process. I have always thought of myself as an active and healthy person until my life changed in what seemed to be a blink of an eye. Now, suddenly, I became a patient with all the fears of the unknown; dreads of multiple doctors and doctor visits, needle sticks for labs and treatments and the various emotions that go along with accepting a diagnosis.
I was told I have cancer. Not just one but two types of cancer. I had a hysterectomy, four months or six sessions of chemotherapy, and three sessions of radiation. I rang my bell in the Oncology center that represents successful completion of all my treatments on September 6th 2022. I give God all the glory for the amazing team of doctors and nurses and techs that have provided me with such compassionate and brilliant care. And God has certainly proven to me his loving care as I have seen some miracles during this part of my cancer journey.
But, this is a nurses nephrology site and I am a nephrology nurse. The reason I am sharing this today is because sometimes we all need to remember what it's like to be a patient. To see sights from their chair, to hear what they hear and see what they see. There's no way we can feel what they feel unless we ourselves experience their inner most being of who they are. I consider myself lucky that, while not experiencing CKD or AKF, I have been in that chair getting chemo; seeing the nurses on the treatment floor caring for each patient, hearing words coming from their mouths and not having a readiness to understand or the ability to yet comprehend everything they are saying to me. Recognizing that even I, a NURSE, needed to hear the same things several times before I could accept what was happening to me. I can't tell you how difficult this was for me. To understand and fully recognize that I was a patient, not in control, not knowledgeable in this area, not feeling well, not wanting to accept this diagnosis. Yes, I was feeling the role of a patient, and for probably the first time feeling what it's like to live in their shoes. That feeling of: "I'm a person, not a disease" often entered my mind. Not because anything the staff did or didn't do, but because I had to remind myself of it. I was feeling like a disease during this process because I had to live with it every day, every night, at home, at work, how I ate and drank. I lost my hair, my ability to do all the things I love to do, I have neuropathy in my hands and feet, muscle pain, I gained 30 pounds. I feel like I totally lost my identity.
Have we ever asked our patients how their disease process makes them feel? Have we had the time to stop and understand just why they are so angry? When they have shouted at us do we become rigid and think they are being nonadherent or do we recognize they have not yet come to terms with their diagnosis or treatment? Do we stop to think that maybe they have not only lost control of their life as they have always know it, but perhaps they are feeling that they have lost their very identity?
We are all nurses and have the nurses hearts for care and compassion. Do we forget that on a hard twelve hour shift when we are tired? I have always thought of myself as very compassionate to our patients and I love what I do. But this journey has given me a deeper understanding of what our patients go through and I have learned a new lesson in compassion. I hope that by sharing this experience, anyone who reads it will also have a new and fresh outlook on what being a patient is really like.
Blessings,
Barbara