As many of you who suffer chronic illness or fibromyalgia know, finding a doctor who is willing to listen to you and understand what you are saying is a difficult and lengthy task. A good doctor needs to truly listen to more than the words that you are saying, he or she truly needs to hear what’s going on so he or she can work to help you live as comfortable a life as possible. However, the doctor is not the only part of the equation.
What about the nurse who greets you as you come in for your millionth appointment, or holds your hand during your treatment, answers your questions that the doctor may have overlooked or not been able to address. Or the nurse who is alongside of you when you are in the hospital as a patient, scared, alone, unsure of what is going on, or if you are the seasoned patient, the one who knows your back story and is anxious to catch up with you.
Or the RN in the emergency room who is gathering your patient history as you sit in agony in the ER and is patient with you when you can’t form a complete sentence. The one who doesn’t leave your side, makes sure you as comfortable as you can be or sees to it that the doctor gets on top of your pain. The nurse who advocates for your and understands your pain without question.
Nurses and doctors are the same in the fact that not all doctors or all nurses understand what you are going through. Even those in the medical profession still question whether fibromyalgia is an actual “condition” or a diagnosis given to those who they’ve given up on or think it’s all in their head. Yet there are those nurses out there who are more than aware of the struggle we as fibro sufferers are going through.
Nurses are the next best advocate for patients besides the patients themselves. So what are some things that the nurse can do to help you as a patient have a positive experience on this difficult journey? The most important thing is believe your patient. One of first things nurses learn in nursing school regarding pain is that, pain is what the patient says it is, where the patients says it is and how bad the patient says it is. That may not be exactly the wording of how we learned it, but nonetheless, the idea is there. Next, be patient with us.
Sometimes it is so hard to explain what the pain is like that we are having; trying to describe it in a way that makes sense can be harder than it sounds. Don’t rush us when we are trying to express what we need to say, it’s not always easy to get out full sentences and if we are having a bad day, sometimes the tears make it difficult to express what we need to say.
Be our advocate. Not only is it difficult to express what we need to express to you, it’s almost harder to express that to the doctor, so help us. Help us to help the doctor understand what we are dealing with. Whether we are in the clinic, in the ER or in the hospital, it is hard for us to express how we are feeling without feeling like we are being looked at as a hypochondriac who is searching for pain meds.
Be in our corner and help us ask for what we need. And lastly, be gentle with us, don’t dismiss us and try not to rush us. This journey is a long, painful and exhausting one. We need someone besides the doctor to understand what is going on and help us navigate this thing. Thank you for helping us navigate along this crazy path, thank you for the support, the hugs, the laughs and the understanding. Thank you for your patience, and most of all thank you for your care and concern. And then there is the nurse to patient relationship.
Nurses are a lifeline in more ways than one. As a nurse, they see many different types of patients, whether it’s in the clinic setting, ER, or hospital. A nurse is the link to the doctor, the nurse helps the doctor learn about the patient and helps in letting the doctor know what the patient needs. So how does a nurse deal with a patient with fibromyalgia? What can a patient do to help the nurse do their job well and advocate for you?
Be honest with the nurse; tell them exactly what is going on, what your symptoms are and when they started, if you’re not sure, just tell the nurse that. Don’t assume that the nurse understands everything you have going on with you just by looking at you. Don’t tell the nurse what you expect for treatment or meds, let him or her do their job and assess you; gather the information they need so that they can advocate for you to the doctor. They ask all those questions to help paint the picture for the doctor; they need the information to help the doctor understand and build a course of treatment.
Be able to tell the nurse what medications you are taking, it makes the nurses job a little easier, especially if the nurse is an ER nurse or hospital nurse who may not have immediate access to your medical record. Be patient with the nurse as you expect the same from them, they want to help you so help them understand how you feel. If you feel uncomfortable with the nurse that you have, it’s ok to request a different nurse.
They will understand, when you are vulnerable and in pain, the relationship you have with your nurse can negatively impact the quality of care you receive, don’t be afraid to speak up. If you aren’t comfortable with the nurse, you will likely not be as forthcoming with them as you need to be for your own sake. You want a nurse that you can relate to and you feel comfortable discussing your issues with and who is able to work for you. If you have questions, don’t be afraid to ask. Nurses don’t want you leaving the hospital, ER or clinic with questions.
Nurses want to make sure that the patient’s entire care team is on the same page and all are in agreement with the treatment plan. The nurse and patient relationship is just as important as the doctor patient relationship. The nurse’s main goal is to help you and understand what you are going through. The nurse can’t help you if she doesn’t have all the information he or she needs to do their job.
As a patient, understand that the nurse may not know a lot about fibromyalgia but he/she is there to help you. The more you can tell the nurse, the better chance of understanding. I think that everyone can agree that fibromyalgia is a puzzle, treating the pain is difficult and finding a treatment plan that works sometimes feels next to impossible.
But the relationship with your healthcare team can be a great asset in navigating this journey, and while the doctor/patient relationship is important, I think the nurse/patient relationship is every bit as important to the equation, if not more. The nurse is the first line of communication, and most nurses have a built in compassion level for their patients that is hard to match.
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