Top Tips for Self-Advocacy
After a rare neuroimmune disorder diagnosis, there is a big learning curve when it comes to navigating doctors, appointments, accessing care and treatment, and other aspects of the medical world. Self-advocacy is when someone communicates, conveys, or asserts their own interests, desires, needs and rights. Put simply: self-advocacy is speaking up for oneself! It is an important skill to develop if you have a diagnosis of Acute Disseminated Encephalomyelitis (ADEM), Acute Flaccid Myelitis (AFM), MOG Antibody Disease (MOGAD), Neuromyelitis Optica Spectrum Disorder (NMOSD), Optic Neuritis (ON) and Transverse Myelitis (TM), or if you are a care partner for someone with a rare neuroimmune diagnosis. Here are some tips from the SRNA team: If you have questions or concerns when visiting your provider, or if the diagnosis is uncertain, you can suggest a physician-to-physician consult with a provider whose focus is on the disorder. If they say no and are not willing to look beyond their own knowledge, it’s a good indication to seek a second opinion or a new provider. Explore the Medical Professionals Network to find physicians in your area. There are a lot of resources out there, but they can be difficult to find if you are not familiar. Learn about and utilize any of the hospital or clinic resources that may be available; this can include social work, behavioral health resources, support resources, local community resources, adaptive recreation or exercise, or nurse case managers. Many clinics or hospitals have resources to help navigate treatments, appointments, insurance, and more. You can also establish a nurse case manager with your insurance company. Their jobs are to assist you in advocating for proper care and treatment, help find additional resources and support, and work with the insurance company and provider. When preparing for appointments or seeking support for understanding and managing your symptoms, one of the best things to do is prepare. Use SRNA’s resources and fact sheets to help you formulate questions or help explain your questions. Don’t be afraid to print out and take information with you to your appointment or to ask your provider to reach out to SRNA if they question the information provided. Establish the goals of an appointment and verbalize it with the provider at the beginning to allow them to prepare and to set expectations for time. Have your questions ready and written down for your appointments! If there is not enough time, ask for another follow-up appointment, or ask to connect with the clinic nurse or physician assistant if available. They often have more availability in their schedules to see a patient or to discuss via phone. Remember and recognize that healthcare providers are human, too. They have good days and bad days, and may not know all of the answers to every question. Understand that medicine and science in general do not have all of the answers for these disorders. We are continuing to evolve and learn how to understand, treat, manage, and live with the impact of these disorders. If you are struggling or want to learn from others who have “been there”, find a community. Talking with others who have navigated their own experiences around the healthcare system and managing their symptoms can help. Find your nearest Support Group Leader, find one-to-one support through the Peer Connect Program, or participate in an upcoming coaching series on relationships and communication. Learn more and dive deeper:
