Finding a Doctor
Your primary care doctor is your medical team leader. People who have chronic medical conditions, such as lupus, tend to be healthier and more satisfied with their care when they have a good relationship with their primary care doctor. Primary care doctors are your point-person for medical questions and referrals. They help to coordinate your care and address your whole health. Your primary care doctor can address questions about nutrition, exercise, prevention of heart disease and stroke, screening for cancer, and vaccinations. They also help to address injuries, pain, and common infections.
Rheumatologists are specialists who care for patients with autoimmune disease, including lupus. Rheumatologists help to determine if symptoms are caused by lupus and what treatment may be needed to address active inflammation. You may also work with a variety of other specialists depending on what symptoms you have. Rashes are best evaluated by a dermatologist who is familiar with lupus. Chest pain and breathing symptoms may be evaluated by a cardiologist or pulmonologist. If lupus affects the kidneys, a nephrologist will be a key member of your care team. If you take a medication called hydroxychloroquine (Plaquenil®) for your lupus, you will see an ophthalmologist for regular eye exams to be sure the drug is not causing harm to the eye. Your rheumatologist will work closely with these specialists to help make recommendations for your care.
You may have had negative experiences interacting with doctors which may make it difficult for you to trust in medical providers or the healthcare system. For example:
- Healthcare systems contain systemic bias and racism which contribute to lower health outcomes among underrepresented groups.
- Medical gaslighting occurs when a doctor or other medical professional downplays a patient’s symptom. The provider may be dismissive or critical of the patient’s reported concerns. This can then cause the patient to doubt their own concerns.
This reality may contribute to feelings of uncertainty about medical visits. It is important for you to know that these feelings are valid and you are not alone. Building trust is key, but it may be a slow process. Here are some suggestions for what to do when you don’t feel heard:
- Bring a trusted friend or relative with you to the appointment. Some hospital systems or support groups may have suggestions for patient advocates who can accompany you.
- Make a list of your top concerns and requests for any testing. Provide this information early in the appointment.
- Request documentation to be added to your records of your symptoms and ask for access to your health care documentation.
- It may help to share your concerns with your care team up front. Requesting medical providers who are concordant with your ethnicity, gender identity, and language may also help to strengthen your trust in your care team. You may not be able to find a specialist who shares the group within which you identity, you may be able to find a primary care doctor who does. Other members of the medical team, such as nurses, medical assistants, physical therapists, and pharmacists may also be sources of information and support.
Additional tips to find the right fit:
- Check with your insurance to find providers who will be covered by your plan.
- Primary care doctors may have different training:
- Pediatricians care for children and sometimes young adults.
- Family practice doctors receive training in obstetrics, gynecology, pediatrics, and adults.
- Internists are doctors who care for adult and geriatric patients.
- For help finding a rheumatologist:
- Ask for references. Your relatives, friends, co-workers and pharmacist may have recommendations.
- Logistics matter. Consider the clinic’s location, office hours, ease of contact and responsiveness, and wait times to be seen.
Before Your Visit
Be prepared. Before making an appointment, make sure that the doctor you are seeing accepts your health insurance.
- You deserve to be comfortable and treated with respect. When scheduling your appointment, make requests if you need them. If you belong to an underrepresented group, ask if a doctor who shares your identity is available to see you. If you need an interpreter, request one. Ask for a chaperone during physical exams. Your provider wants you to feel as comfortable as possible.
- Make lists of your questions and symptoms ahead of time. Write down your thoughts about how treatment is going.
- Prioritize your concerns. If you want to talk about more than two or three items, make a list and put the items in order of importance. That way you can make sure to talk about the most important items first.
- Think about what to bring with you. Bring a copy of your health history to your appointment, especially if it is your first visit to a particular doctor. Your health history may include a record of the dates and results of past tests, major illnesses, hospitalizations, medications, chronic illnesses, allergies, and a family history of any physical and mental illnesses. Make sure to bring all relevant health insurance cards.
- Bring someone you trust to your appointment with you. Tell them what you want to get out of the appointment ahead of time. They can help you remember what you want to discuss and take notes for you during the appointment.
- Schedule regular appointments to talk about managing your symptoms, to address your concerns, and to track your progress. This can be a more helpful way to manage your symptoms instead of making appointments only when symptoms worsen.
- Track your symptoms with a symptom journal. Write down in your calendar or a notebook the types of symptoms you experience and their intensity. This information can be helpful to both you and your doctor in tracking your medical condition and it can help you identify potential triggers that aggravate your symptoms. See the ‘Symptom and Activity’ monitoring tab in the Conquer Lupus for one example of symptom tracking.
During Your Visit
- Share information. Tell your doctor about any current symptoms or concerns during your visit. Explain how you feel physically, share your emotions, and give examples. Tell your doctor if you are having trouble with activities of daily living, such as bathing or dressing. Tell your doctor about other health care providers (like specialists or therapists) you have seen and any treatments they have prescribed or recommended.
- Take notes at office visits to make sure you understand and remember what you need to do. Bring a pen and paper to your appointment so you can write down what your doctor tells you.
- Audio record your visit so that you can play it back later. This way you can be sure that you don’t miss any information and get the most out of your doctor’s appointments.
- Ask questions and be direct with your provider. If you do not understand something your provider says, ask him/her to explain it. Ask the same question more than once or ask if your doctor can explain something in a different way, if you need more time to process an answer. If you need further clarification, consider scheduling a phone conversation or speaking to a nurse or other provider.
- Get it in writing. Ask your doctor to write down what you should do between now and your next visit. This may include instructions for how to take medications, specialists you should see, and/or lifestyle modifications. You may also want to ask for documentation of your medical visit.
- Be brave! Health issues can be hard to talk about, but it is important that your doctor has as much relevant information from you as possible so that her/she can recommend the best possible care.
- Work together with your healthcare provider to get the best treatment possible. Respecting each other and meeting regularly can help your relationship.
After Your Visit
- Keep a medical folder of health papers, including those you take to office visits and those you get from your healthcare provider. A medical folder is good to have in case you switch healthcare providers, travel, or want to have a medical history.
- Take charge and follow the plan your healthcare provider gives you. If you have problems, or your condition worsens or changes, call to report it. Do not wait for a problem to become too big before seeking medical help.
- Don’t worry that if you start to feel better, your healthcare provider will stop seeing you. Your treatment is an on-going process, and he or she needs to know when you are having both bad and good days.
- Find a new doctor. You have the right to change doctors. To switch doctors within the same office, talk to someone at your physician’s office directly. To change your provider completely, try contacting your health insurance. If you have a negative experience with a doctor or medical team, say something.
- Utilize electronic health records as another resource for navigating healthcare. Many clinics and hospitals offer an online health portal where patients can communicate directly with their physician. You may also be able to refill prescriptions and access ‘after-visit summaries’ of your appointments through this resource. Ask your physician if they offer this resource and how to set up an account.