Do you experience problems with short-term memory, sense of direction, finding or forming words, placing letters or numbers out of order? Do you lose your train of thought mid-sentence? The American College of Rheumatology, the Centers for Disease Control and Prevention, and the National Institutes of Health all agree that those of us with fibromyalgia can have these cognitive issues. So how can we improve our communication with our healthcare providers (HCPs) despite fibrofog?
Talk – Listen – Clarify
For effective communication to occur, there must be mutual appreciation for each other’s role as an active partner in our patient- centered care. We can develop this relationship when all parties involved use a little TLC.
When we visit our physician, nurse practitioner, physical therapist, or other healthcare provider, it’s important that we are on the same page. What do we hope to achieve in our allotted time? For those of us with fibromyalgia, being prepared means writing down our questions and providing information about when our symptoms began, what makes them better or worse, if a symptom is new, etc. Details are important as related in Essential Factors For Relating Fibromyalgia Symptoms. But, here are a few talking tips:
- Be prepared to talk by writing down a list of concerns.
- Be respectful, knowing that most HCPs see 20+ patients every day.
- If your agenda is exhaustive, don’t expect to cover all your questions in one visit.
- Share a copy of your concerns with your HCP. This is especially important because your HCP may see something in your concerns that is more of a priority than you give it. When trying to put a puzzle together, we need all the pieces.
- Use descriptive words to convey your pain, fatigue, and function.
- Be clear about how your symptoms interfere with your normal daily activities.
- When you want an explanation, try to word your questions so they require more than a yes or no answer.
- Develop a rapport with assistive staff members. They are the gatekeepers.
Not all communication is verbal; body language also communicates. Here’s an example. I was experiencing a refractory migraine on a recent visit to the pain clinic for a procedure. When my doctor entered the room, I told him I might have more difficulty processing information than usual because I had had this migraine for two days. He told me I didn’t need to say anything, because when I wear my dark glasses, he knows I am having a difficult time. I had no idea he paid that much attention. No words for this bit of old fashioned TLC (tender loving care).
The cognitive problems we experience are barriers for us. Our HCP could take our inability to stay focused as a sign we are disinterested in what they have to say, which can interfere with trust. However, if we let our provider know we are fibrofog challenged that day, trust can develop.
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- Don’t talk when your healthcare provider is answering your questions.
- Establish eye contact.
- Write down key words you hear. (I know the temptation to interrupt because I am afraid I will forget; that’s why I try hard not to become distracted. Sometimes, I will even ask my HCP to help me remember later.)
- Expect changes in your treatment plan.
Our HCPs are responsible for listening too. If you feel they are disinterested in your concerns, they become part of the problem instead of the solution. Share your concern with your provider, but if you can’t get clarification, it may be time to move on.
We are accountable for our role in our healthcare plan, but first we must agree on what that plan includes. Clarification of the information we share between each other is a must for communication to be effective.
- Clarify by repeating back to your HCP what you believe you heard.
- Clarify your HCP heard the context of what you said.
- Jointly evaluate effectiveness of treatments.
- Discuss how your treatment plan improves or prohibits functioning.
- Clarify specific changes in your healthcare plan.
Our HCP should appreciate what we have to say, that we are listening and that we are being respectful when we communicate as a team. We can all use a little TLC for building a trustworthy relationship.
This article was first published on ProHealth.com on March 1, 2019 and was updated on May 8, 2021.
Celeste Cooper, RN, is a frequent contributor to ProHealth. She is an advocate, writer and published author, and a person living with chronic pain. Celeste is lead author of Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain and Broken Body, Wounded Spirit, and Balancing the See Saw of Chronic Pain (a four-book series). She spends her time enjoying her family and the rewards she receives from interacting with nature through her writing and photography. You can learn more about Celeste’s writing, advocacy work, helpful tips, and social network connections at CelesteCooper.com.