As a person with fibromyalgia I spend a large majority of my time engaged in activities related to my health, including frequent office visits with multiple medical professionals, often at different offices. This has given me an insider take on the strengths and weaknesses of various practices and practitioners.
What can you do to best support a patient with fibro?
1. Provide a space that is both physically and emotionally considerate. For example, use lamps or covers for florescent ceiling lights, provide seating options such as a soft chair or something to recline in, and use active listening. Remember, patients may have waited weeks or even months to see you. Always be empathetic, and use appropriate coping strategies to manage your own compassion fatigue.
2. Be thoughtful about cultural considerations such as power dynamics, and privilege. Ask the patient about preferred gender pronouns, and what they prefer to be called (Dr., Mrs., Ms., Mr, first name, nickname).
3. Sit down, make eye contact, use an open posture, and patiently allow them to ask questions. Do not stand near or with your hand on the door.
4. Encourage patients to take notes or audio record sessions. This can help to assure that they recollect the nature of the session accurately and can share this information with caregivers, friends, and loved ones.
5. Gather information about all current and previous medications, vitamins and supplements, and treatments (at home, medical, alternative). Although this is generally routine, oftentimes the information is simply recorded in the notes. This has impacted my care and treatment planning, as physicians have sometimes been surprised to learn something I thought they had known all along.
6. When a patient is giving their medical history, never criticize their other practitioners or their approaches. This can be very discouraging, especially if you’ve placed trust in a particular physician who is now being questioned. If you disagree with a diagnostic approach or treatment plan, discuss these concerns clearly and identify a plan to address them with the practitioner and provide feedback.
7. Never interrupt a patient to tell them you understand. You don’t. I often wait months to see specialists who do not even allow me the opportunity to complete sentences or thoughts – which I’ve often been thinking about in preparation of these appointments. This is not only discouraging but damages rapport. This is particularly important when treating women, individuals who identify as trans or gender non-conforming, and people of color, as they often experience discrimination within the healthcare system.
8. Answer the following question for them, “What else would be helpful to know that I may not think to ask at this time?”
9. Provide patient-friendly, credible written information about fibromyalgia, including the commonly co-occurring conditions.
10. Provide a means for them to ask follow-up questions between appointments.Encourage them to do so. This can help them to feel supported and prevent self-diagnosing via the internet.
11. If you make a referral to another practitioner, or for diagnostics, offer to have your office assist in making the arrangements. While seemingly mundane, these tasks can be overwhelming and energy sapping for someone with fatigue. Not only is this time consuming, it takes away from what little free or leisure time they may have, and contributes to a sick identity by having to continually provide insurance information, describe symptoms, etc. Assisting with this process may provide both physical and psychological relief.
12. Gather information about all current and previous providers, ranging from medical specialists to yoga instructors. Request consent to speak with these providers to both gather information about their approaches, and to educate them about fibromyalgia, including the patient’s limitations. In my experience, professionals rarely speak with one another, even upon request. I end up playing telephone between them and often leave confused about what to do because they have differing perspectives about the best course(s) of treatment, and sometimes their advice contradicts one another. This has been my experience from practitioner to practitioner, including those of the same specialty, as well as across disciplines.
13. Be prepared with resources including local support groups, and credible organizations where they can learn more or engage with others with their illness, or similar conditions. Consider attending some of these yourself in order to learn from your patients.
14. Offer some option for patients to evaluate their experience during the visit or to make suggestions for improvements. Keep this simple, and make it voluntary. I often observe things that could improve future office visits and wish there was a way to share this information. However, other patients may ascribe to different cultural norms or prefer not to expend energy unless necessary.
15. Allow patients to choose the modality for communicating with you, and for arranging/confirming appointments. Do not require that they do this on their own online, or require that they log in somewhere to manage notifications. Some patients may like this autonomy, while others may find it burdensome.
16. Spend time to record thoughtful, accurate records about your visit. Document the functional impacts of their illness. This information may be required to support the need for Americans with Disabilities Act accommodations at work, support claims for short and/or long-term disability, and assist in transfer of or continuity of care. Offer the option for patients to review and approve visit notes.
17. Work actively to create an integrated approach to treatment, working collaboratively with other practitioners. Engage actively in designing a treatment plan with attention to nutrition, medications, vitamins and supplements, exercise, alternative treatments (acupuncture, yoga, Epsom salt baths, heat/cold packs, TENS machines, chiropractic, etc.). Set goals and monitor progress.
18. Offer home or virtual consultations with the patient, caregivers/family, or other providers. Traveling can be a financial burden (time off work, public transportation costs, etc.) and can be time consuming. When energy is a factor, travel for a visit can result in post exertion malaise. The irony is that the time and energy expended to access the healthcare can have a negative impact. If it is anticipated that a physical examination will not be necessary, consider virtual follow-ups.
19. Provide a written summary of your visit, including clear instructions about next steps, restrictions or limitations, and follow-up procedures. Assist the patient in making arrangements for the next visit.
20. Emphasize your respect for the patient’s time. Place an emphasis on timeliness, such as beginning on or close to the scheduled appointment time. Waiting can be stressful and fatiguing.