One consistent theme in my care over the past 13 years has been the fact that Nurses make all the difference -- and we don't celebrate this enough. The nurses who have worked with me over the years have helped me advocate
for myself, have helped me get what I need from my physician, and have even cheered me on when I needed some major cheering up. Why don't we celebrate the fact that this role is so vital for successful long-term care in the chronic illness community?
When I was first diagnosed, it was often the nurse who would teach me how to administer my new injectable medication by talking me through the process and answering any questions that I had. The clinic nurse would also help me get my lab requested, and also reminds me from time to time when i'm over-due. When I was in a horrible flare, exhausted and unable to talk care of my 1 year-old, it was my nurse who answered the phone and helped me make some really hard decisions about what to do next. My nurse if often able to more quickly and reliably get back to my phone calls and emails -- providing a really vital link between me and my care team.
The most important aspect of the nurses who have been involved in my care over the years, however, has been how nurses have made me feel - it's been vital for my self-determination in my care.
When I was hospitalized for the first time with IBD, it was a scary feeling. I was a newlywed, living far enough from my family that it was hard for them to visit, and was hospitalized far enough from my home that my friends couldn't come, either. This meant that it was just my husband and myself, left to try to figure this thing out. He often slept in an upright chair next to me at night, so that he could be there for rounds in the AM. This was helpful, but when he left for work each morning, it was the nurses who took on the support role for me.
One afternoon, a certain surgeon very bluntly told me that I was in "no condition to have children," and that I "would never make it to 35 without surgery," and I was shattered. After days of confusion, no food, and minimal support to make very big decisions, I needed care and appreciation for the position that I was in. It was the nurses who provided that moment for me when he and the students left the room -- and she also cheered me on. I still remember one saying "keep fighting for what you need -- you're doing great."
During that same hospitalization, I was driven to intense insomnia and night sweats as a result of the high-dose steroids. It was an evening nurse, Alison, who made me feel incredibly supported and reminded me that I'm not burden for needing my sheets changed regularly. She would chat with me when I couldn't sleep, and even helped my husband get comfortable. I was so uncomfortable, myself, but knowing that I was being cared for made the long nights more bearable.
There will never be a moment when a nurses role can be replaced. Their work is vital to healthcare, especially in chronic illness management when connections to care teams, education and support, and advocacy are necessary to good, long-term care. Thank goodness for nurses -- we should support them today and EVERY DAY and a necessary part of our teams.