12 Things Nurses May Not Know About the Chronically Ill

Posted by Lisa Copen

September 1, 2009

Nurses make the medical world go around. It’s no secret that a nurse can make all the difference not just during a medical visit, but also a medical procedure, scheduling an appointment, and handing you tissues as you receive a devastating diagnosis. A nurse not only needs to know all of the medical terms and procedures, but she must also be there emotionally for the patient because oftentimes her simple presence can determine how well we as the patient deal with that particular circumstance and mentally deal with 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, 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.

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.

No one has volunteered. One even said, “If word got out, I would lose my job!”

By understanding each others needs however, we can only improve the long term relationship between the nurse and the patient. Sadly, many marriages don’t last as long as the nurse/patient relationship!

Here are 12 tips chronically ill patients would like to give nurses:

[1] 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.

[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] 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] 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] 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] 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] When you do something like call a prescription into the pharmacy so it’s ready when I get there, and I don’t have to wait, I recognize that it’s an extra step for you, and appreciate it a great deal.

[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.

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.

Lisa Copen is the founder of Invisible Illness Awareness Week held each year in Sept and featuring a free 5-day virtual conference w/ 20 speakers. Follow II Week on Twitter for cool 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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