When you’ve been experiencing new symptoms or symptoms that have continued to get worse, going to the doctor can be nerve-racking. You may have even been a victim of medical gaslighting that is causing you to avoid going to the doctor. Or maybe you are scared of sharing such personal information about yourself with a total stranger
While it’s understandable to be wary of seeing a doctor, it’s important to feel comfortable and empowered to tell your doctor about what you are experiencing. Because you know your body best, you play one of the most important roles in your health care. By advocating for your health and getting involved in the decision-making process, you can improve your health outcomes and reap many benefits.
Be Your Own Health Advocate
Advocating for your own health can be intimidating and you may be unsure of where to start. Here are seven ways you start to can feel confident about advocating for your health.
Educate yourself on your condition
Talking about your health to a stranger and sharing deeply personal information about how you feel physically, mentally, and emotionally can be nerve-racking. During a doctor’s appointment, it’s normal to feel overwhelmed with emotions as you share such details. To help you get the most out of your appointments and feel confident in your discussions with your doctor, learning as much as you can about your diagnosis is critical.
Start learning about your condition in your initial consultation with your doctor. This may look like listening and taking notes during an appointment or asking specific questions. Physicians typically send patients home with a packet of information about their condition, which is another good place to start. It may be helpful to ask your healthcare provider if they recommend any additional resources, like more reading or support groups.
While your doctor is a valuable source of knowledge, don’t discount your ability to do your own research. As you move along your health journey, you may find yourself wanting more in-depth information about your illness. The internet can provide a wealth of incredible information, but it’s important to make sure you’re getting your health information from reliable sources. As a guide, health websites that are part of the U.S Department of Health, like the National Institute of Health (NIH), or funded by the government, like the Center for Disease Control (CDC), are a safe place to start. Professional non-profit organizations and medical schools are also trustworthy sources of information.
Doctors and patient educations resources can help give you a foundation of knowledge about your condition, but the best place to get real-world information is from those who know your condition best: other patients. Turning to peers can make all the difference in how you live your day-to-day with your condition. Peer-to-peer learning enables you to learn from real patients who are experiencing the same symptoms and challenges as you. By sharing with peers, you can learn what treatments have been most effective for others and what you may want to try, provided you speak with a healthcare professional first. This kind of learning can take place on social media or on platforms like PatientsLikeMe. You can also find peer support groups through different non-profits and advocacy groups.
Be open and honest
The doctor-patient relationship (DPR) is the foundation for which you, the patient, can receive the best care. DPR involves vulnerability and trust and is one of the most meaningful experiences shared by people. Research has shown that poorer health outcomes flow from an impaired doctor-patient relationship. This can happen when a patient feels like they are experiencing medical gaslighting, misdiagnosed, or otherwise out of a partnership with their doctor.
While it’s the doctor’s responsibility to provide a standard of care, like adequate testing and treatment, it’s equally as important to be open and honest with your doctor about your health. This means sharing details about your:
- Current prescriptions and medications
- Past medical records, like illnesses, surgeries, and lab tests
- Family medical history
- Any herbs, vitamins, or supplements you take
In addition to sharing as much medical information as possible, it’s important to communicate with your doctor about any questions or concerns you have about your diagnosis or treatment regime. If there is anything you don’t understand, like certain medical terminology or why you are taking specific medicine, ask your doctor or nurse to explain it in a simple way until you feel comfortable.
Involve a family member or friend in your care
The DPR is a meeting between two experts: the doctor is an expert in medical information, and you are the expert on your body. But when you are trying to explain to your doctor about what you are experiencing with your body, and your doctor is trying to explain what they think the cause is, it can get incredibly overwhelming and difficult.
It’s helpful to have a friend, family member or partner attend doctor’s appointments with you to serve as your fellow advocate. An outsider can provide you with the support you need to get through a difficult appointment. They can also ask questions you may forget or explain what symptoms they see to help your doctor get a clearer picture. A support person can help you digest the information your doctor is telling you and help bring clarity to the situation.
Although many doctor’s offices are not allowing additional persons into appointments with you due to COVID-19 precautions, there are other ways to get support around your care. Some ways a loved one can help you even if they can’t physically be in the doctor’s office with you is:
- Sit in the waiting room
- Practice asking them questions before your doctor’s appointment
- Write down a list of questions or observations for you to take with you
- Call or video chat, like FaceTime, them during your appointment
Even just knowing there is someone on your side in the waiting room can help reduce any fears or anxieties you may have before and after your appointment.
Understand your health insurance
Health insurance is complicated. Most American’s don’t fully understand the basics of their coverage. A new survey from Bend Financial found that more than half of Americans are hopelessly confused by health insurance. In the survey, 2,000 respondents were asked to describe their understanding of the U.S health care system. About 56% of them admitted to feeling “completely lost when it comes to understanding health insurance”.
Previous studies have shown that confusion about health insurance leads to people choosing more expensive coverage than they need. The uncertainty about cost and coverage can cause people to delay or avoid medical care, which can make many conditions worse.
While it’s difficult to learn and memorize the details of your insurance, getting an understanding of basic coverage can help you get started. If you require more intensive testing or specialists, there are resources provided by the insurance company that can give you clarity on what your plan offers. By learning about your insurance, you can better navigate the health care system with less chance of ending up with unexpected, costly medical bills.
Keep a copy of your own health records
If you have ever switched doctors or were referred to a new specialist, you know what a hassle it can be to have your records transferred. Transferring medical records often come with a small fee and although it’s manageable once or twice, if you have to keep transferring them those small fees can add up quickly. In addition, medical records can be deleted after seven years from the last date of treatment. While records are destroyed in a safe manner that prevents them from being reconstructed, it can leave you and your new doctor in the dark about your past medical history.
To ensure you don’t lose your medical records and reduce the additional cost of transferring records, ask your doctor for a copy of your visit notes each time you leave an appointment. Visit notes will include information about your presenting symptoms (why you went to the doctor), discussions you had during your appointment, medications prescribed, procedures, and next steps, like a follow-up visit. A copy of your visit can either be made or printed out for you after your visit or sent electronically by e-mail. Many providers use digital patient portals, which makes managing and tracking your records easier.
By keeping tabs on your own documents, you see exactly what your doctors are seeing and ease your mind about any concerns you have about them getting lost.
Get a second opinion
People make mistakes every day, this includes doctors. In the United States, 12 million people are affected by medical diagnostic errors every year. Researchers estimate that nearly half of these errors can be harmful and in some cases, fatal. While it’s easy to blame the doctor, there are more problems at play than a negligent physician. Issues like unreported systems and complicated technology can also lead to a misdiagnosis.
A misdiagnosis isn’t the only reason to seek a second opinion. A 2017 study of 286 patients found that as many as 88% of patients looking for a second opinion leave the appointment with a new or refined diagnosis. Meanwhile, another 21% of patients leave with a “distinctly different” diagnosis. The study also found that 12% of patients learn the original diagnosis was correct.
While you may not need a second opinion, it might be your best course of action. Here are some things to keep in mind when thinking about seeing another doctor:
- Treatment recommendations are risky, invasive, or have long-term consequences
- Started treatment but symptoms persist
- Diagnosed with a rare disease or cancer
- If your gut tells you something is off
Seeking a second opinion doesn’t mean you are difficult or in denial about your condition. It means you are being smart and empowered to take control of your health. After all, you know your body best, and it’s vital for you to take an active role in your health care.
Work with your healthcare professionals as a team
If you have a chronic illness or suffer from comorbidities, it’s common to have multiple types of doctors you are working with at one time. For example, if you have diabetes, you may see an endocrinologist and dietician. Studies show that diabetes can double your risk of developing depression, which can make diabetes worse, too. This may mean you also need to see a psychiatrist or therapist to treat your depression in addition to your diabetes.
When working with multiple providers, it can get confusing to keep all the information straight and communicate to one on behalf of another. Medical information can be incredibly complex and difficult to fully understand. To avoid any miscommunication, it’s important to get your providers on the same team: your team. By simply filling out consent to communicate forms for each of your providers granting them permission to communicate with one another, you can eliminate any confusion among your health care team and your health.
Communication consent forms allow only specific doctors to communicate about specific information, for a specific period of time. All of which are rules set by you. You also have the right to terminate communication among providers at any time should you need or want to. But by giving all of your doctors the ability to communicate with one another, you open the door for them to accurately describe their findings and develop a holistic approach to treatment that will help you best.
You Are Not Alone
If you have been newly diagnosed or are struggling to receive the right care, know you are not alone. There are thousands of patients at PatientsLikeMe who understand how difficult it can be to advocate for your own health. Join our community today to connect with other patients and learn how they navigate their health care.