Three years ago, I was diagnosed with a genetic liver disease, (stage 4 cirrhosis) and collected a handful of related autoimmune diseases like they were stamps. It’s been a long 3 years. The patient advocate (me) became the patient and now I theoretically straddle both sides of the fence.
I have 4 specialists. I take 12 medications a day and some days are great while others are filled with pain. I am chronic and if I’m lucky I will be chronic for a very long time.
In my mind I know how I would take care of me. Ideally there are things as a caregiver I would say or do to make my life easier or better. But I’m not my caregiver. My caregiver (my husband) can’t read my mind. He hasn’t been caregiving for over 15 years like I have. The past three years have been a struggle for him too. It hasn’t been easy because I’m not an easy patient. I am type A, anxious by nature to always be productive and active. Resting and taking care of myself doesn’t come naturally for me. But we are learning as we go, trial by fire, so to speak.
Luckily I work full time in a field I am passionate about. I still advocate and support cancer patients. On this side of the fence I am fluent in lung cancer support, cancer patient navigation and cancer advocacy. I have patience for those who are newly diagnosed and struggling. I provide information and resources and counselling. I am good at what I do and I’m always eager to learn more.
On the other hand I’m still learning how to be a better patient, to recognize when my body needs rest, to ask for help and reserve my energy for the most important things in life. I am learning how to ask questions and advocate for my care. I am learning to communicate what it is I am feeling. I am learning to be patient with my caregiver and my family.
I’m still learning how to jump the fence between caregiver and patient.