Every person is unique, and so is every nurse. Finding the best match between patient and nurse can make a big difference. Jade has had her share of experiences with nurses, and she’s learned some lessons along the way.
When Jade started college, one of her first responsibilities was to find a new nurse in a new town. Unfortunately, the nurse she found did not take Jade's preferences into consideration.
“I don't believe that all nurses are familiar with Gaucher patients and their daily challenges. I knew that I needed a nurse that could be a good partner for me with my disease journey.
It's important to have your own voice and advocate for yourself from the get-go.
So when it’s a not a good fit, it’s best to put in the effort to find a good fit. Nurses are there to help you. And when it’s a good fit, they may also provide emotional support and be a valuable part of your life.
“I had one nurse for 8 years, and she was wonderful. She was the sweetest woman. My kids were very happy around her, she knew everything that was going on in my life, she became part of the family. It was just...nice.
“I knew that she'd been a nurse for a long time, but she knew that I've been a patient for a long time. If she had a suggestion, she would offer it by just saying, ‘Can we try something new? Have you ever tried this?’ We got into a groove and it was a really positive experience for me, and it just ended up making the time a little nicer and the situation that much less stressful."
Over the years Jade has found that being upfront from the start works best.
“Miscommunication can happen, since we're coming at this from different experiences. I’ve learned to express what I need, but I do it in an amicable way. For example, you can tell the nursing service, ‘Hey, I have a dog and a cat, so don't send someone who has allergies’ or ‘I have kids in the house’ or ‘I tend to feel this kind of a way or have this kind of availability or have this sort of preference.’ I’ve found it helpful to give them my preferences up front so that they send someone who will accommodate me.”
There may be times when you find yourself with a bad fit. Here’s Jade’s advice:
I take a deep breath and stay calm because it can be emotional. I try to be clear about my preferences, but if it's still not working out, or I’m uncomfortable with them, I just call my Case Manager.
“At the end of the day, there are certain things that we just need because we need them. We're the ones getting infused, we’re the ones with the disease, and unless we're making really unreasonable requests, most nurses will be happy to accommodate most things.”
These are the things that Jade has learned from her own experience and the strategies that have worked for her. But remember that everyone has different needs and preferences. So be sure to stay true to what you need when searching for a nurse who fits you.
Tagged in: College challenges, Nurses, Speaking up