Self-advocacy begins with the belief that you are inherently worthy of love, respect, dignity, and autonomy.

This mindset influences your actions and shapes how others perceive, believe in, and respond to you. It also determines the extent to which your medical team and support systems can assist you. Others can only support us as much as we value ourselves and are willing to invest in our own well-being. Your self-image and self-appreciation directly impact your ability to advocate for yourself and assert your rights as a deserving individual and patient. You have the right to take the time to express your concerns and ask questions, with the expectation of being listened to, supported, and respected without bias. Furthermore, you are entitled to all information about your health so you can make informed decisions about your care and livelihood. Unfortunately, we do not always receive this from medical professionals or government agencies, despite years of contributing to these systems. Therefore, it is essential to be prepared to advocate for yourself when necessary.

EMPOWER YOURSELF THROUGH EDUCATION

Learn and understand your diagnosis. Researching and understanding a Chiari diagnosis is crucial for self-advocacy; learning to utilize online resources, articles, and support groups to gather information. Finding reputable, evidence-based sources, such as those referencing peer-reviewed studies, helps justify concerns to medical professionals despite encountering conflicting information due to ongoing, rapid research in the field. For more information, visit Chiari Bridges.

Learn and understand your diagnosis. Researching and understanding a Chiari diagnosis is crucial for self-advocacy, which includes learning to utilize online resources, articles, and support groups to gather information. Most of the information available is found online in articles, websites, videos, and online support groups. Finding accurate, up-to-date, and reputable sources is paramount. Here at Chiari Bridges, we try to reference the studies and peer-reviewed articles behind our information, so you know the official sources that the information came from and will be better able to justify your requests and concerns to your doctors. Regardless of your source, be prepared to find a lot of conflicting information. These contradictions mainly exist because Chiari and its co-morbid conditions are being researched like never before, so it’s an exciting time, but that fails to give much comfort to those having to fight with their doctors on the existence of every symptom they face.

Know your rights as a patient and your doctor’s legal responsibilities. Rights and responsibilities are often governed by state and federal laws and are outlined and included in the paperwork given to you from medical practices, health care systems, hospitals, and facilities. Your providers will likely require you to sign that you agree to and understand them. In doing so, these are legally binding for both parties. Thus, you will want to make sure you understand them fully before signing them and get a copy for your own records (if they don’t give them to you, don’t be afraid to ask for a copy).

Learn and understand your health insurance. Know what your policy does and does not cover. Become familiar with which doctors, medical services, and facilities are covered. Find out about copays, deductibles, out-of-pocket costs, and other relevant information. Find out if your policy includes out-of-network benefits and associated costs, including out-of-state benefits. If no out-of-network/out-of-state benefits exist, find out if exceptions can be made. Almost all insurance plans do have some form of exceptions and/or appeals process for this very purpose. There are commonly two stages of appeal: an internal review (your appeal is reviewed in-house) and an external review (where you are specifically asking for a review made by an outside organization that has not been a part of your provision of care and has no conflict of interest).

Learn about Advance Directives, Living Wills, Durable Healthcare Power of Attorneys, etc. You will want to familiarize yourself with all of these and decide what, if any, is right for you.

EMPOWER YOURSELF BY DEVELOPING SKILLS AND ACCESSING TOOLS

Communication Skills and Tools. Learning to know when and how to communicate your needs and desires to others is important, especially when you have a limited amount of time with your doctor. Brevity, clarity, relevance, problem-solving, negotiating, and preparation are key skills and tools. It might be beneficial to sit down beforehand and write the specific points you want to address and your ultimate goal for the appointment. Maintaining a respectful dialogue is always of utmost importance. Keeping your emotions under control is crucial.  Otherwise, your doctor might take you less seriously or assume your symptoms stem from psychological causes.

Medical Records. As a patient, it is important to always obtain a copy of your medical records and review them for accuracy. It was once thought amongst medical professionals that a patient’s medical records were solely for doctors to communicate amongst themselves. Some medical professionals still hold to this antiquated ideology and become obviously disgruntled that you have chosen to exercise your patient right to not only obtaining your medical records but also, demanding they are 100% accurate. What is listed in those medical records will be used to treat you. It is important they are accurate and are corrected if they are not.

Keep copies of all imaging and radiology reports. Images are not kept forever, nor are other medical records. Sometimes doctors do not tell you some of the things found in your imaging/reports and other tests because they deem them “incidental” or irrelevant. Sometimes, doctors miss what is obviously clear altogether. Many Chiarians go through years of misdiagnosis before being properly diagnosed. Often, a look back through your medical records will show patterns and assist in the discovery, diagnosis, and treatment.

Patient Portals. With the advent of portals being used in many practices and facilities, patients now have easier, free access to many of their medical records. The same rules apply to the information retained in the portals regarding how long it is kept there. Any conversations you might have with your provider through the portals should be saved as well.

Organization and Preparation. Every person has their own way of “organizing.” This extends to your medical records keeping as well as preparation for appointments. There are some free online resources to help you with this organization. Some like to make a “chart” for their medical records by creating a binder with tabs. Some use digital charts/record-keeping tools for free online or for purchase. Many phone apps exist to help as well. However you decide to organize is up to you, but it is an invaluable tool to help you arm and equip yourself for self-advocacy.

Self-Care and Coping Skills. We often underestimate the necessity of self-care, as well as the power of developing positive, healthy coping skills and techniques. Self-care is pretty standard for all: getting proper nutrition, rest, appropriate and safe exercise, taking meds faithfully, taking time for recreation and refreshment, and tending to the beauty that is your body, mind, and spirit. Everyone has ways they “cope” in life in general and within the framework of chronic illness. It’s important to find the ones that work for you.

EMPOWER YOURSELF BY FINDING THE RIGHT DOCTOR(S)

Self-Education. Self-education precedes the ability to find a good doctor. If you are not aware and knowledgeable about your diagnoses and disorders, you will not recognize whether a doctor is the right one for you. Educate yourself on your conditions and on what your potential doctor has published on your conditions: What are their credentials, experience, affiliations, number of cases they have treated, and specialties and sub-specialties? Look for any official publications, scientific journals, or other research that your provider may have written. Additional information can be found online through state records and other sources regarding your physician.

Ask family, friends, and other medical professionals. Find others who have PERSONAL FIRST-HAND doctor/patient experience with the potential provider. Keep in mind a doctor can be a great fit for one patient but not for another. You can also ask for the opinion of your present doctors or other medical professionals.

Getting 2nd Opinions and When to Find Another Doctor. It is never wrong, always wise, and completely within your rights as a patient to seek a second opinion (or more). If you are facing a potential surgery or procedure that could be risky and/or permanent, it is prudent to get multiple opinions. It is your right to ask for and change doctors at any time or facility. You do not need to give any reason nor explain yourself, though you will likely be asked to do so. Be careful not to burn bridges or become “blacklisted.” Always find a new doctor before leaving the old one.

EMPOWER YOURSELF BY DEVELOPING YOUR SUPPORT SYSTEM AND GETTING HELP. Being a self-advocate does not mean “going it alone.” Developing and surrounding yourself with a support system is vitally important, and many consider it to be “their lifeline” to keep going.

Local or online support groups. Finding the right local or online group can be just as important as finding the right doctor and educating yourself. Remember, there is a lot of accurate and inaccurate info out there (even amongst our medical professionals). A support group is only as good as the respect they have for you in your fight. If they respect the Chiari fight, it will be evident in the way they treat one another and in the accuracy of the information they espouse and share. Online groups each tend to have a different set of rules that members are expected to follow: some allow and encourage advice and recommendations amongst their members, and some do not allow it at all. Not every group will be the right fit for each Chiarian, but you can expect any good group to be kind, supportive, respectful, accurate in the information disseminated, gentle in correcting inaccurate information shared, respectful of your autonomy and choices, and zero-tolerance for bullying.

Workplace Support. There are laws that protect you, and that can even provide assistance and support within the workplace that you should familiarize yourself with. The Family and Medical Leave Act of 1993 (FMLA) is a federal law in the United States requiring employers to provide employees with up to 12 weeks of job-protected, unpaid leave for qualified medical and family reasons annually; but you must file it as FMLA leave to get the protection.

School Support. There are programs and opportunities within schools that you should also familiarize yourself with and use to protect yourself if your Chiarian is in school. In the United States, the US Department of Education has worked hard to incorporate federal laws to help reduce discrimination and increase structured programs to help ensure the success of students with disabilities. As a result, most schools, including colleges, have programs where students with disabilities can get special allowances for recording devices, note takers, removal of time limits on tests, etc. These programs are usually subsidized at a state level and have different names depending on your state, but a school counselor should be able to point you in the right direction. These protections may be limited in privately funded colleges and universities that do not receive any public funds.

Support and Assistance Programs. There are many programs, assistance, and support available in nearly every local area (through county trustees, charitable organizations, and churches), as well as state and federal programs. Just are few examples of help available are assistance with mortgage, rent, utilities, food, clothing, medical bills, medical insurance, free or reduced-cost prescriptions, holiday assistance, back-to-school, free or reduced-cost dental clinics, pro-bono legal help, cash assistance programs, etc.

Professional Advocate Support. While self-advocacy is important, you might find that you need more help than you can accomplish alone. Managing your health can be confusing and overwhelming. Sometimes it can be hard to get your voice heard by the healthcare professionals around you. The healthcare system itself is very complicated. If you are having difficulty finding your way through the complex maze of healthcare, you might want to consider seeking the help of a professional advocate. There are hospital advocates, non-profit patient advocates, for-profit (employer-based) advocates, and independent advocates for you to turn to.

Family and Friends Support. Chronic illness can take a huge toll on relationships. We all want and need the love and support of our family and friends. Not everyone has this support, making it all the more painful. No two families or friendships are alike. If you find a lack of support amongst your friends and family members, seek to restore it and, in the meantime, find another means of support, as Chiari is not something you want to fight alone. Support groups are a good alternative means to help find the support you need.

Counseling Support. Sometimes we all find ourselves struggling to cope. Maybe we lack support or want to protect our relationships by not always talking about our problems to friends and family, yet need an outlet. Finding a therapist can be one of the best things we can do for ourselves. Doing so doesn’t mean you’re crazy or weak. It is a sign of strength and indicates that you value and respect yourself in every facet of your life, which brings us back to the reason we learn to self-advocate in the first place. Believe you are worth it – all of your body, mind, and spirit! If you ever find yourself in a life-threatening crisis, don’t be ashamed to contact a crisis hotline.

When to get a lawyer. If you believe you are the victim of abuse, harm, malpractice, or neglect, consider speaking with a malpractice attorney. If you think your workplace rights are at risk, contact an employment lawyer. If you can no longer work due to your condition, look for a disability lawyer. Elder law attorneys may also be helpful, and their services are not limited to the elderly. Whenever you feel your rights have been violated, it may be time to seek legal counsel.

Self-advocacy will empower you to know and speak up for yourself, make your own decisions, learn and exercise your rights and responsibilities, learn about your condition(s), and how to get accurate up-to-date information in order to make decisions concerning your care, treatment, and overall well-being. It will help you find the right doctors, support systems, options, resources, and get other help available to you. As you journey along in self-advocacy, you will grow both as a patient and a person. You will also discover many additional ways that self-advocacy benefits and empowers you, and in turn, you’ll be able to help pass those benefits on to others as well.