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.
Those of us with illness can be quick to criticize the nurses who hardly acknowledge us, who forget to bring our medications when we are in the hospital, and who seem to enjoy their job as the gatekeeper to their doctor a little too much.
But as a chronically ill patient we have a long list of encounters with nursing staff, so we must also fondly recall the nurses who made unquestionable improvements in our care by being our advocate when no one else would listen, or just by holding our hand while we received a underwent painful (and possibly lonely) procedure.
When I was recently checked into the hospital, the nurse had to push me outside from the wound care center around the hospital's construction zone walkway. Ironically, we both had rheumatoid arthritis and I made a new friend by our simple ten-minute conversation. Despite my infection, I felt much more comfortable by the time I got to the hospital.
As the editor of a magazine called HopeKeepers, I have attempted to find a nurse who would submit an article that would shed some light on what a typical day for a nurse is like at a doctor's office. I realize that it can be frantic, scheduling and rescheduling dozens of people, all who need to see the doctor today. Nurses try to please the physicians, check patients in, take health histories, give out lollipops and smile, all while attempting to do more than can be expected in the time allotted.
No one has volunteered. One even said, "If word got 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] It grows tiring to always be the patient and only have people interested in my physical body. When you ask me about how I am coping with my illness emotionally, I feel like you really care. Sometimes it loosens me up enough that I may even be more comfortable and forthcoming about things that doctor may benefit in knowing about the physical symptoms.
[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 appreciate it when you ask, "Would it be okay if I pray for you?" Some people may say no, but for many it will be the first time some cared enough to even ask.
[7] There are times when I am have been having a medical procedure and my family is not able to be there. I know it's a minor procedure for you, but the fact that you understand it's a major procedure to me, and you stick around and hold my hand, is one of the nicest things anyone ever does for me.
[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] If you are having a bad day, just tell me, "Today has been a little hectic." I know you are human and have rough days, but when you are grumpy I tend to think I've done something to upset you and have been known to 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.
Those of us with illness can be quick to criticize the nurses who hardly acknowledge us, who forget to bring our medications when we are in the hospital, and who seem to enjoy their job as the gatekeeper to their doctor a little too much.
But as a chronically ill patient we have a long list of encounters with nursing staff, so we must also fondly recall the nurses who made unquestionable improvements in our care by being our advocate when no one else would listen, or just by holding our hand while we received a underwent painful (and possibly lonely) procedure.
When I was recently checked into the hospital, the nurse had to push me outside from the wound care center around the hospital's construction zone walkway. Ironically, we both had rheumatoid arthritis and I made a new friend by our simple ten-minute conversation. Despite my infection, I felt much more comfortable by the time I got to the hospital.
As the editor of a magazine called HopeKeepers, I have attempted to find a nurse who would submit an article that would shed some light on what a typical day for a nurse is like at a doctor's office. I realize that it can be frantic, scheduling and rescheduling dozens of people, all who need to see the doctor today. Nurses try to please the physicians, check patients in, take health histories, give out lollipops and smile, all while attempting to do more than can be expected in the time allotted.
No one has volunteered. One even said, "If word got 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] It grows tiring to always be the patient and only have people interested in my physical body. When you ask me about how I am coping with my illness emotionally, I feel like you really care. Sometimes it loosens me up enough that I may even be more comfortable and forthcoming about things that doctor may benefit in knowing about the physical symptoms.
[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 appreciate it when you ask, "Would it be okay if I pray for you?" Some people may say no, but for many it will be the first time some cared enough to even ask.
[7] There are times when I am have been having a medical procedure and my family is not able to be there. I know it's a minor procedure for you, but the fact that you understand it's a major procedure to me, and you stick around and hold my hand, is one of the nicest things anyone ever does for me.
[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] If you are having a bad day, just tell me, "Today has been a little hectic." I know you are human and have rough days, but when you are grumpy I tend to think I've done something to upset you and have been known to 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 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!
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