Nurses and Chronically Ill Patients: Open Communication is Key
Posted Sep 06 2009 7:17pm
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Nurses and Chronically Ill Patients: Open Communication is Key by Lisa Copen
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.
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.
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 haven't found a nurse yet who was even willing to be interviewed for an article; more than a few have said, "If my article was discovered I could 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 tips chronically ill patients would like to give to nurses:
 When you ask "Are you taking any medications?" and I hand you two pages with them listed, please don't look shocked or as if I am an addict.
 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.
 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.
 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.
 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.
 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.
 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.
 When I'm in the hospital it's hard to give over the disbursement of all of my medications to you. I'm what some call a "professional patient" and used to taking care of myself; monitoring my pain level and knowing when and how much medication to take. When you go the extra mile and help me get medications on time, I really appreciate it. The time of day I take it can make a huge difference in my pain level for the day.
 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.
 When I'm trying to schedule an appointment for a specific day, or you are trying to reach me and I'm unavailable, I'm not trying to be difficult. Although a lot of my time is filled with doctors appointments, therapies, lab tests, etc. I'm also trying to have as normal of life as possible and give my family the same thing.
 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.
 When I'm in the hospital, I'm very grateful for the things you help me to do such as shower, change the sheets on the bed, or even just have a conversation to distract me from the pain. It makes a difference in my stay. Thanks for not treating me like a project, but a person.
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 each year in Sept and featuring a free 5-day virtual conference w/ 20 seminars online. Follow II 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!