For patients with autoimmune disease, management means understanding a wide range of symptoms, unpredictable disease courses, and any impacts on quality of life.
But how can patients better communicate with their providers?
The Global Autoimmune Institute expounds on key tips elucidated by Johannah Ruddy, M.Ed., a doctoral candidate at Campbell University and co-author of Gut Feelings: Doctors and Patient-Centered Care. How Knowledge, Commitment to Care and Empathy Improve Patient’s Lives to help patients establish a strong relationship with their provider and diminish stigma.
When patients provide a clear and organized account of their symptoms, it allows a physician to gather relevant information efficiently and make a more accurate diagnosis. Noting the location, intensity, and duration of pain over time also helps the patient to become more aware of their own condition.
“Many patients find it helpful to bring a written list of questions, medications, doses, a brief diary when symptoms are at their worst, and even a trusted friend or family member as support,” says Ruddy.
If you are seeing a specialist, do not necessarily leave out symptoms that seem unrelated, e.g., skin rashes, while you’re at the gastroenterologist for abdominal pain. There may be connections that do not seem apparent at first.
Explain each symptom or pain by answering the questions below. Then, make a summary of a few sentences and practice at home.
Describe the symptom.
Example: Sharp, throbbing pain that feels deep.
Where do you experience this?
Example: In my lower abdomen, on the right side.
How long have you had this symptom?
Examples: 1 month or 3 years.
How often does it happen? Is it associated with a particular activity?
It happens every morning when I wake up.
It comes and goes throughout the day, depending on how active I am or what position I’m in.
It happens in bursts – the symptom appears for a few weeks, and then I’m symptom-free for a week.
What makes it worse?
Examples: Eating or vigorous activity.
What makes it better?
Examples: Taking a hot shower or using a heating pad.
How does it affect your life?
Examples: I am unable to participate in physical activities like jogging or picking up my kids. On days when the symptom is especially debilitating, I cannot get out of bed.
Before you go to the doctor’s office, it’s helpful to collect relevant records of lab work, imaging, prescriptions, and doctor’s notes from previous visits. Also, make sure you have a list of any serious health conditions (including autoimmune diseases) that run in your family.
You can also make a list of all medications, supplements, and herbs you are currently taking and details about them. Check out Section 5 of the toolkit “Symptom & Medication Tracking” for templates and what to include on your list.
Collect names and numbers of any previous or current doctors and practitioners. This is especially helpful when requesting medical records or when you’d like to work with multiple providers simultaneously.
Write a brief synopsis of your health journey by pulling information from your journal, symptom checklist, medical records, and medication and supplement list. All of this information can be distilled and added to a health timeline. Once you have a clearer picture and have identified patterns and significant issues or events from your timeline, you can summarize them. This abbreviated version is what you will present to your doctor. For more guidance, head to our How to Tell Your Chronic Illness Story page.
Learning about your condition – even if you have no information other than your symptoms – can help you hit the ground running. Educating yourself (which is different from self-diagnosing) can spark questions about diagnosis, treatment, prognosis, lifestyle factors, and other topics to discuss with your doctor.
Generally, a physician’s knowledge, experience, and training are important to finding the right answers and making the right connections. However, conducting research can help a patient grasp the basics, making it easier to communicate effectively and comprehend medical explanations. It can also provide a sense of control and alleviate some anxiety by giving patients a proactive role in managing their health.
Ruddy notes that autoimmune conditions are complex, chronic, and involve multiple factors.
“There is no magic cure, and each patient responds differently to the current management options available,” she says.
Knowledge evolves over time. Having an open mind allows a patient to consider different perspectives and be receptive to new options.
If you are aware you have a certain autoimmune or related condition, look through the Autoimmune Organizations list to help you in your research. Johns Hopkins is also a top-notch source for information about autoimmune diseases. As not all diseases are explicitly listed under “Conditions and Diseases” on the Johns Hopkins website, you may need to use their search bar to find what you need.
Through patient-centered care, patients can avoid uncomfortable interactions with healthcare providers, and a more supportive and collaborative environment can be created.
As someone with an autoimmune disease herself, Ruddy urges her patients to see their relationship with their doctor as a partnership.
“This entails being transparent and honest with one another, collaborating to achieve desired outcomes, and working together on testing and treatments,” Ruddy says.
“It takes time to build this kind of relationship, but it can lead to better clinical outcomes, patient satisfaction, and physician well-being.”
Define your healthcare goals. Are you focused on finding a diagnosis? Do you want to get a particular issue or symptom under control? What is more important to you? Be upfront about the severity of your symptoms, how they affect your quality of life, and what you want to change.
Start with realistic expectations. It is not possible for one person to know everything, be able to diagnose every illness, or hold all the answers when it comes to treatment. Aim for the middle ground between blind trust and bold skepticism when talking with your doctor, and leave room for multiple perspectives. Keep trying, stay clear and focused, and refer to your notes for reinforcement if you start feeling off-course.
Practice healthy skepticism. When searching for care, you might scroll through online reviews, get intel from friends and peers, and read about local doctors in magazines. Remember that all of this information about who is the best and who is the worst is subjective, so take it with a grain of salt. One person’s experience will not necessarily be your own – even with the same doctor.
Know that you deserve to be heard. Go in with an open mind but also a willingness to speak up for yourself. Ask questions, get clarifications, and if you notice a problem in communication, say something. Our toolkit has a section on Advocating for Yourself; see page 20 for tips!
Remember that it’s a partnership. You hold a special knowledge about your body, and your doctor has extensive education and training in medicine. In this new patient-physician relationship, your story and your doctor’s expertise are valuable in different ways. You describe your experience, set goals, and make the final decision about your health while your doctor serves as an educator and guide. Keep in mind that gaining trust and building a collaborative relationship will take time.
Generally, patients may not think of all the questions they have immediately, and additional information is likely to become available to both a patient and a provider over time. As it does, a patient should continue asking questions.
It helps to go through your notes from the research you’ve done to come up with questions. Are there certain tests you’re curious about? Therapies you would like to discuss? Unanswered questions or concerns collecting dust in the back of your mind? Write them down in order of priority and bring them to your appointment.
In doing so, patients will have a better opportunity to have a more detailed conversation, discover additional treatment options, and become more adequately able to process information.
Ruddy says she has come across patients who feel uncomfortable and embarrassed when discussing their illnesses and symptoms, including their pain.
“This could be because of their cultural or generational background, where they regard their doctor as an esteemed authority figure and find it difficult to ask questions or be truthful about how their illness affects their life,” she says,
“I tell patients that their provider needs to hear everything, even things they may consider embarrassing, to get a clear picture of what testing might be warranted to lead to a diagnosis or treatment and to understand the true impact of the condition on their life.”
Don’t underestimate the emotional toll that autoimmune diseases can have on a patient’s well-being. Patients should expect healthcare providers to approach situations with empathy and understanding, integrating mental health support into a treatment plan when needed.
Some medical conditions, such as autoimmune disorders, can also present with symptoms similar to those attributed to stress. Proper evaluation is necessary to identify conditions and provide appropriate treatment.
“When we look at illness through the lens of the traditional biomedical model, we cannot assess the impact of symptoms on the whole person,” says Ruddy.
“We are blind to other issues that might be contributing to generating symptoms, such as genetics, previous life experiences such as infection, trauma, and other factors. This sets the stage for us to dismiss symptoms and dismiss the patient without any answers or help.
“Stigma highly impacts patients’ behaviors, attitudes, and overall clinical outcomes.”
Self-advocacy means knowing your rights, abilities, and needs and communicating them to others. This is an important skill to develop – whether or not the doctors you encounter are compassionate or attentive, dismissive or unresponsive, and whether or not they wholeheartedly support you or treat you unfairly. Self-advocacy is about finding and using your voice in order to get your needs across and make decisions about your life.
When you advocate for yourself, you may experience stronger and more positive relationships with your doctors and practitioners, along with a sense of ownership over your healthcare journey. It takes practice to build your skills, and the better you become at expressing yourself, the more your self-confidence will grow.
In an ideal situation, you will be working with your doctor in an environment of mutual respect and effective communication.
You and your doctor will build and maintain trust over time and share in the decision-making process. Your doctor will be knowledgeable about the conditions and symptoms you present and will serve as an educator and guide. When unsure about something, they will dig deeper or point you to another specialist or avenue. Your doctor will believe you when you tell them something is wrong, and they will be invested in diagnosing and treating your condition.
In a good patient-doctor relationship, you may feel:
Despite the need for patient-centered, compassionate care, you may encounter situations in which this need is not fulfilled.
When you have a complex, lesser-known, or invisible condition, routine tests may come back “normal.” Without hardcore “proof” that something is wrong or that a disease is present, a doctor may suggest you return when your symptoms progress. Or they may flat-out dismiss your symptoms and tell you that “it’s just stress.” Even if the relationship starts off well, there may also be a point where your doctor hits a roadblock or their level of expertise is insufficient.
In a problematic patient-doctor relationship, you may feel:
Try to notice in the moment – your body may even give you physical signs like sweaty palms, rapid heartbeat, tensing muscles, or a new breath pattern. First of all, remind yourself that you are not imagining your symptoms and that you need and deserve quality care. Give yourself the authority to ask questions and learn about your rights as a patient. It is your body and your life!
If it feels ok, communicate your concerns with your doctor. They may not realize the effect their language or demeanor is having on you until you voice your concerns. If your doctor is receptive, you will be able to work together to improve communication.
Remember: there are times when moving on to a new provider is the right decision, and there are times when using your voice to self-advocate will help turn the tide.
In Ruddy’s view, most patients have felt stigma to some degree or another.
“We are learning to understand why one patient chooses to believe the stigma and fall prey to the maladaptive behaviors around it, or another chooses to fight against it and redefine the narrative,” she says.
“The latter approach is more adaptive as the patient can then appropriately find a healthcare provider, friends, and others who will provide empathy, validation, and support.”
Ask questions! Whether you are wondering if you should be tested in certain ways or if there are alternative diagnosis or treatment options for your condition, have a thorough discussion with your doctor. Ask all the questions you need to and make sure that you are satisfied with the response.
Here are a few examples:
“What are the risks of running this test?”
“Do you think I should have this test?” “Can you explain why or why not?”
“Is there another way to find answers?”
“Could this symptom be connected to something else?”
“What other possible conditions could I have?”
“Why do you think I’m experiencing these symptoms? What do you think could be triggering them?”
“Would you please explain about functional reference ranges?” (In blood testing, functional ranges help determine the risk for disease while pathological ranges are diagnostic of disease.)
“Can we search for other underlying issues (such as nutritional deficiencies, microbiome imbalance/gut dysbiosis, infections, etc.) that can be further tested for and addressed now?”
“What are my treatment options for this condition?”
“Do you have advice on ways I can manage my symptoms on a daily basis?”
“Do you have suggestions on preventive measures I can take to keep my symptoms from worsening?”
“Have you seen other patients with similar symptoms?”
“Is there another practitioner you recommend who may be able to help?”
Believe yourself! You have the unique experience of spending every hour of every day living in your body and managing your health. Do not let anyone – doctor, friend, or family member – make you doubt what you are experiencing.
It’s crucial to approach healthcare with self-compassion. Being kind to oneself during medical consultations can reduce the anxiety and stress associated with seeking help.
“I encourage patients to “ditch the shame” they may feel about their condition,” says Ruddy.
“It can be hard when we are feeling our worst, highly symptomatic and looking for answers, but looking completely healthy on the outside. Stigma and shame tend to ride together with these conditions for patients.”
Cultivating a positive mindset can also help a patient to become better equipped to understand what it means to live and cope with a disease.
It is not easy living with chronic illness and dealing with debilitating symptoms that impact every aspect of your life. On top of that, navigating the medical care system is no walk in the park. You may experience frustration, anger, fear, distress, or hopelessness, or simply feel overwhelmed.
Everyone needs support. Oftentimes, you can get support from a licensed counselor, who will help you cope with the emotional burden of chronic illness. Search for someone who has experience working with individuals who live with chronic health conditions.