The medical world could not function without nurses. It’s no secret to any of us who has had a doctor’s appointment or been in the hospital that a nurse can make all of the difference in our total experience and recovery process. Whether undergoing a routine procedure, scheduling a simple appointment, or being there beside us while the doctor has a serious conversation, a nurse’s presence can determine how well we as the patient copes with the situation and emotionally processes the outcome.
If you live with a chronic illness, you have likely been around enough nurses to remember one who didn’t acknowledge your presence, the one who procrastinated in bringing your medication when you were in the hospital, or maybe just the nurse who enjoys her role as the doctor’s gatekeeper a little too much.
That said, chronically ill patients have a long list of encounters with nursing staff over the years, so we also have the advantage of being able to warm-heartedly recollect the nurses who made undeniable improvements in our healthcare. Perhaps she was an advocate on our behalf when no one else would listen. She may have looked the other way when visiting hours at the hospital were over. Or maybe she just held your hand while you had a painful (and lonely) medical procedure.
Recently, I was checked into the hospital straight from the wound care center. The nurse who was told to push me in the wheelchair to the hospital had to go all through a construction zone maze outside, but ironically, she revealed while she walked that she too had rheumatoid arthritis like I did. I felt like I made a new friend within our ten-minute conversation and much more relaxed by the time I got to the hospital.
For years I’ve attempted to get a nurse to write an article about her typical day for HopeKeepers Magazine. I’d like patients to know how the nurse’s day is filled with scheduling issues, checking patients in and the constant lack of time to accomplish all that is expected.
I have not yet found a nurse who was willing to even be interviewed for such an article; more than a few have even exclaimed, “If anyone found out, I would lose my job!”
The better chronically ill patients and nurses keep trying to improve communication and increasingly understand one anothers needs however, there is only room for trusting relationships. It’s a relationship that (sadly) can last longer than a marriage.
Here are 12 ways to better understand the chronically ill patient.
[1] When you ask what medications I am currently taking, please don’t look flabbergasted or skeptical when I pull out a couple of sheets of paper. I’m really not an addict.
[2] When you take a moment to ask me about how I am doing emotionally, not just physically, I feel like you really do care. In some ways this makes me more comfortable and even forthcoming about the physical symptoms when the doctor asks me questions later.
[3] I appreciate the fact that you celebrate the little things with me when I come in for an appointment. You are one of the few people who know how hard it is to try to reach a goal weight or wean off of a medication. I realize you see patients like me every day and hear their stories, so your enthusiasm about my successes are even more special and the highlight of my day.
[4] Logically, I know you don’t know every medication on the market, but when you have to ask me how to spell the medication that is advertised in every womens magazine, I wonder how often you get out of the office.
[5] When you say things like, “You cope so well with your disease. I really admire what a great attitude you have,” that can keep me going for another week.
[6] I’m thankful for the times you ask “Can I pray for you?” Though some of your patients will say no, for many it will be the first time someone has ever cared enough to ask.
[7] When I am undergoing a medical procedure and my family cannot be there, having you hold my hand makes all the difference. Thanks for understanding the fact that any medical procedure, no matter how minor, is major to me.
[8] I am somewhat of a “professional patient.” And that means I can come across a little bit like a control freak when it comes to monitoring my pain level and knowing when and how much medication I need to control it. That said, handing you the reins of dispersing all of my medication when I’m in the hospital is a challenge. The time of morning I take my drugs makes all the difference in my day. So I appreciate when you are able to get it to me as close to the right time as possible.
[9] I know you have bad days too. Feel free to tell me “Today has been a little crazy.” You are allowed to be grumpy, but let me know if I am not specifically the cause of your mood and to the so I don’t take it personally.
[10] I know sometimes when you are trying to get me in for an appointment my schedule can be difficult. I’m not trying to be complicated. Although a great deal of my time is filled with doctor’s appointments, therapies, lab tests, etc. I’m also trying to work around my family’s schedule to have as normal of life as possible.
[11] I appreciate it when you are able to call in prescriptions so they are ready at the pharmacy when I get there. I know it’s an extra step for you, but it helps me tremendously.
[12] When I am in the hospital your willingness to help with a shower, change the sheets, or just have a conversation to distract me from where I am, makes all the difference in my stay. I appreciate the fact that you treat me like a real person, and not just a project.
Living with a chronic illness is difficult. Choosing the career path of nursing is not easy either. When each remembers to pass along simple encouragement in the words of “thank you” or “I admire your strength,” both the patient and the nurse can have a beneficial, and sometimes even a blessed, relationship.
Lisa Copen is the founder of Invisible Chronic Illness Awareness Week held annually in Sept and featuring a 5-day virtual conference w/ 20 speakers. Follow Invisible Illness Week on Twitter for prizes and info. Blog about invisible illness on your site, be a featured guest blogger, meet others, read articles and lots more. Make a difference!