A diagnosis of multiple sclerosis (MS) can feel like being shoved into the deep end of the swimming pool while you were fast asleep and being told, “Wake up! It’s time to learn how to swim.”
While you find yourself in shock and trying not to drown, living with MS requires that you also learn how to become your own best advocate. This takes time and careful consideration.
Here are a few basic steps to get you moving in the right direction.
Build a coordinated health care team
MS is a disease that can directly or indirectly affect almost any area of the body connected through the central nervous system. Your basic health care team will include your primary care physician, specialty doctors (including your neurologist), an MS-certified nurse, and a physical therapist, as well as your caregivers, partner, and/or loved ones.
You should expect members of your health care team to communicate with each other and share relevant information with each other to provide you with the best comprehensive care. This will reduce the chance of conflicting plans of care or over- or under-utilization of resources. During consultations, it’s important that your providers are open to multi-sided discussions where you are encouraged to express personal preferences and they present informed clinical options.
Neurologists and MS nurses who attend annual medical conferences focused on multiple sclerosis, such as CMSC or ECTRIMS, are more likely to be up to date on recent knowledge related to MS. Don’t hesitate to ask your providers how they remain informed as to the latest research and treatment guidelines. By working together you can establish a treatment path guided by clear goals.
Become an educated patient
It is important that you learn about MS — symptoms, treatment options, and lifestyle factors — to be better equipped to manage challenges presented by the disease.
Advocacy organizations — e.g., National MS Society (NMSS), the Multiple Sclerosis Foundation (MSF), and the Multiple Sclerosis Association of America (MSAA) — are excellent sources of information and support. NMSS and MSF sponsor local support groups for people affected by MS, and you can find many patient support groups online. Each organization also offers online and print publications that provide the latest information about MS research, disease treatment, symptom management, alternative therapies, and coping skills.
Some of the resources created by MS advocacy organizations are aimed specifically at health care professionals. But you can also access these resources to learn more about the evidence-based guidelines and recommendations that your health care providers are encouraged to follow. Having this knowledge and information can help you be more confident as you partner with your health care team.
Communicate like a pro
Effective communication begins with careful preparation for your appointments. Know in advance what you’d like to talk about. To optimize your time in the office, prepare a document that explains:
- The purpose of the visit, including goals you may have for the visit
- Current, past, improved, or worsened symptoms
- Any changes in your health since last visit, including testing or procedures
- All medications and supplements you take, complete with dosage, frequency, prescribing physician, and reason for medication
- Any prescriptions you need refilled
- Up to three questions you’d like to discuss
Bring a trusted friend or family member to your appointment to serve as an extra set of ears, take notes, and absorb the information discussed, as well as ask the questions you may have forgotten or were too embarrassed or distracted to ask.
Don’t be shy about sharing your preferences or needs with your health care team. Ask for clarification if you don’t understand something. For example, you can ask, “Could you say that again in plain language, please?” Practice active listening by repeating back what is being said to make sure that you understand. I really appreciate it when one of my health care providers does the same for me, demonstrating that he/she understands what I am saying. Ask for a print-out of the visit summary, which is usually easy to produce depending upon which type of electronic health record system your doctor’s office uses.
In preparation for your appointment, you may want to research the topics you wish to discuss. Feel free to share resources you’ve found with members of your health care team, but avoid bringing large piles of printouts to your visit. Summarize the information you’ve found or highlight important sections to help guide your discussion. After the appointment, be willing to follow through with recommendations for treatment, monitoring, or lifestyle changes.
Ultimately, it is up to you to take the actions necessary to improve your health.
Partner with your health care team
A truly collaborative relationship with members of your health care team is ideal; one that demonstrates mutual respect for time, expertise, concerns, preferences, and goals. Ongoing communication between patient and provider and dependable follow-through from each are fundamental parts of coordinating care. Shared decision-making requires that both parties are fully informed and knowledgeable regarding choices to be made.
If your relationship with your health care provider is not what you’d like it to be, work to improve that relationship or find another provider with whom you can develop a collaborative relationship. If you must stay with your current provider because of insurance coverage or local accessibility, be candid with questions or concerns you may have. Don’t be accusatory, but rather be clear and direct. It is up to you to take the lead of your care and to become captain of your health care team.
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Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.