12 Facts for Nurses to Know About Their Chronically Ill Patients

Posted by Lisa Copen

August 30, 2009

by Lisa Copen

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.

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.

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, 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.

As the editor of HopeKeepers Magazine, I have tried to get a nurse to write an article explaining what a typical day is like at a doctor’s office where she is employed. I know many minutes are filled with frantic scheduling issues, checking patients in, trying to please the physicians, all while doing more that can be expected in the time allotted.

No one has volunteered. One even said, “If word got 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 tips chronically ill patients would like to give to nurses:

[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] Thanks for celebrating little things with me, such as reaching a goal weight or decreasing a medication. I know you see these things every day, but to me they are a big deal. You are one of the few people who understand how hard it is for a chronically ill patient to reach these goals. Your enthusiasm makes me day!

[4] Realistically, I know that you are probably not aware every medication that is on the market, but when you ask me how to spell my medication three times, which happens to have an ad in every women’s magazine, I wonder how frequently 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 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] 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 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] 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 really do have a life, even if it’s filled with medical visits, therapies, lab test, etc. I’m not trying to be difficult when you are scheduling appointments or trying to reach me. I just want my family to have as normal of life as possible despite my illness.

[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’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 Chronic Illness Awareness Week held annually in Sept and featuring a 5-day virtual conference 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!

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