The profession of medicine could not operate without nurses. It's not a secret to anyone who has ever been to a doctor's appointment or had a hospital stay that the nurses define our experience and even recovery process perhaps more than any other medical professional we encounter. We may be having a routine procedure, setting up a regular appointment, or having a serious conversation with the doctor; but the presence of a nurse may shape how well the patient deals with the situation and psychologically handles the outcome.
For most of us with a chronic illness, it is not a challenge to remember a nurse who hardly acknowledged our presence, one who kept forgetting to bring our medication when we were in the hospital, or just the nurse who overly enjoys her role as the gatekeeper to the doctor.
But as a chronically ill patient, and our many encounters with nursing staff, we can also fondly recollect the nurses who helped us make undeniable recoveries by being our advocate when doctors wouldn't listen, or by simply holding our hand while we endured a painful (and possibly lonely) medical procedure.
Recently, when I was checked into the hospital, the nurse from the wound care center had to push me in a wheelchair through an outside maze of a construction zone walkway. Ironically, she shared that she too had rheumatoid arthritis like myself. I felt like I made a new friend in those ten minutes and she made me much more comfortable in getting to my destination.
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!"
With chronically ill patients and nurses continuing to improve their understanding of one anothers and each others needs however, there is only room for improvement in this long-standing relationship. Sadly, sometimes the nurse/patient relationship lasts longer than some marriages.
Here are 12 ways to better understand the chronically ill patient.
[1] When you ask if I am taking any medications and I pull out two pieces of paper with everything listed, please don't look flabbergasted or as if I am a drug 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] When you celebrate my little successes with me, it can be the highlight of my day. You understand unlike most people how hard it can be to reach a goal weight on certain medications or what a struggle it can be to wean off a medication. I know you hear the stories of patients like me every day so I appreciate your enthusiasm for my little successes.
[4] Practically, I realize that you are not able to keep up to date on every medication that is out there on the market, but when you have to ask me how to spell the name of my drug three times, which happens to have an ad in all the best-selling magazines, I question how often you get out of the office.
[5] I don't know if you realize how powerful your words are. When you complement me by saying, "You have the best attitude about your illness. I really admire you for how well you cope with it," that can keep me going for days.
[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 there are times that I am having a medical procedure and my friends and family are not able to be there, having your hand to hold makes all the difference. I know many medical procedures may seem minor to you, but thank you for understanding that when it's happening to me, it's all major.
[8] I am what some call a "professional patient" so when I'm in the hospital, I struggle with giving you control over all of my medications to disperse on your schedule. I'm used to taking care of myself and monitoring my own pain levels. When you make an effort to get me my medications on time, I appreciate you going the extra mile. The time of morning I take my medications makes only difference in my pain level for the day.
[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] When you go out of your way to do something like calling a prescription into the pharmacy so I don't have to wait when I get there, I realize that it is an extra step for you, and it doesn't go unnoticed. I appreciate it.
[12] When I'm stuck in the hospital, I appreciate the way you go out of your way to make it as pleasant as possible. Things like help in the shower, changing the sheets, or having a conversation about something normal, all help distract me from my surroundings. Thank you for treating me like a person and not a project.
Coping with a chronic illness is very difficult. Choosing the path of a nursing career is not easy either. When each graciously passes along encouragement to one another by saying "thank you" or "I so admire your strength," both the nurse and the patient can have a much more productive--sometimes even enjoyable--relationship.
For most of us with a chronic illness, it is not a challenge to remember a nurse who hardly acknowledged our presence, one who kept forgetting to bring our medication when we were in the hospital, or just the nurse who overly enjoys her role as the gatekeeper to the doctor.
But as a chronically ill patient, and our many encounters with nursing staff, we can also fondly recollect the nurses who helped us make undeniable recoveries by being our advocate when doctors wouldn't listen, or by simply holding our hand while we endured a painful (and possibly lonely) medical procedure.
Recently, when I was checked into the hospital, the nurse from the wound care center had to push me in a wheelchair through an outside maze of a construction zone walkway. Ironically, she shared that she too had rheumatoid arthritis like myself. I felt like I made a new friend in those ten minutes and she made me much more comfortable in getting to my destination.
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!"
With chronically ill patients and nurses continuing to improve their understanding of one anothers and each others needs however, there is only room for improvement in this long-standing relationship. Sadly, sometimes the nurse/patient relationship lasts longer than some marriages.
Here are 12 ways to better understand the chronically ill patient.
[1] When you ask if I am taking any medications and I pull out two pieces of paper with everything listed, please don't look flabbergasted or as if I am a drug 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] When you celebrate my little successes with me, it can be the highlight of my day. You understand unlike most people how hard it can be to reach a goal weight on certain medications or what a struggle it can be to wean off a medication. I know you hear the stories of patients like me every day so I appreciate your enthusiasm for my little successes.
[4] Practically, I realize that you are not able to keep up to date on every medication that is out there on the market, but when you have to ask me how to spell the name of my drug three times, which happens to have an ad in all the best-selling magazines, I question how often you get out of the office.
[5] I don't know if you realize how powerful your words are. When you complement me by saying, "You have the best attitude about your illness. I really admire you for how well you cope with it," that can keep me going for days.
[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 there are times that I am having a medical procedure and my friends and family are not able to be there, having your hand to hold makes all the difference. I know many medical procedures may seem minor to you, but thank you for understanding that when it's happening to me, it's all major.
[8] I am what some call a "professional patient" so when I'm in the hospital, I struggle with giving you control over all of my medications to disperse on your schedule. I'm used to taking care of myself and monitoring my own pain levels. When you make an effort to get me my medications on time, I appreciate you going the extra mile. The time of morning I take my medications makes only difference in my pain level for the day.
[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] When you go out of your way to do something like calling a prescription into the pharmacy so I don't have to wait when I get there, I realize that it is an extra step for you, and it doesn't go unnoticed. I appreciate it.
[12] When I'm stuck in the hospital, I appreciate the way you go out of your way to make it as pleasant as possible. Things like help in the shower, changing the sheets, or having a conversation about something normal, all help distract me from my surroundings. Thank you for treating me like a person and not a project.
Coping with a chronic illness is very difficult. Choosing the path of a nursing career is not easy either. When each graciously passes along encouragement to one another by saying "thank you" or "I so admire your strength," both the nurse and the patient can have a much more productive--sometimes even enjoyable--relationship.
About the Author:
Lisa Copen is the founder of Invisible Illness Awareness Week held each year in Sept and featuring a 5-day virtual conference w/ 20 seminars online. 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!
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