Your Health, Your Voice: A Guide to Self-Advocacy
Navigating the world of chronic illness can feel overwhelming from the frustrating journey toward a diagnosis to managing life after receiving one and everything in between. Self-advocacy, the ability to confidently represent your needs and concerns, becomes a vital skill. However, many of us don’t learn how to advocate for ourselves until we’re thrust into this challenging position, often in the midst of health crises.
If self-advocacy is somewhat of a foreign concept for you at this moment, know you are not alone. When I was going through the diagnosis process, I was not particularly vocal when in a medical setting, which left me feeling unheard and unseen. I’d never heard of the concept of self-advocacy, and while I thought I was relaying my symptoms and challenges in a helpful manner, and asking the right questions, I learned I still had a long way to go. Looking back, I sometimes wonder if I had been better educated about self-advocacy and what that truly looks like, if my diagnosis wouldn’t have taken an astonishing 15 years. Let’s explore why self-advocacy is essential at various stages of your medical journey, and how to develop it—even if it doesn’t come naturally at first.
The Diagnostic Journey: A Season of Uncertainty
The path to a chronic illness or autoimmune diagnosis can be long and emotionally draining. You may find yourself in a cycle of appointments, tests, and frustration as you search for answers while grappling with symptoms that disrupt your life.
During this time, self-advocacy means being clear, persistent, and informed. Describe your symptoms accurately—what they feel like, how often they occur, and how they differ from your usual health baseline. Keeping a detailed symptom journal can help you track these changes and provide concrete evidence to share with your doctors. If you use an app such as Folia Health, show your medical practitioner hard data from the app in terms of symptoms, severity, and frequency.
Also, be mindful of your language whenever in a medical setting during this pre-diagnosis season. Think in terms of data; for example, instead of saying, “I feel tired all the time,” explain, “I feel an overwhelming exhaustion that prevents me from completing daily tasks, and it has been occurring four to five days a week for the past two months.” When I look back on this time frame, I remember telling doctors that I felt feverish or that I was having trouble regulating my body temperature; if I was in that same doctor visit today, I would have said, “I’ve had a fever above 100-degrees X days out of the past week, and I spike a fever within 30 minutes of being in the sun or heat. I also will exhibit a rash during this time.” The specificity here could have helped a physician make a stronger connection to an illness that exhibits these symptoms; in my case, I was displaying classic lupus symptoms. Specificity matters, as it gives your healthcare team a clearer picture of what you’re experiencing.
Sometimes, you may need to push for additional testing or seek second or even third opinions. While this can feel uncomfortable, remember that your health is worth the effort. A trusted ally, like a friend or family member, can provide support and encouragement during appointments if you feel intimidated or overwhelmed.
After the Diagnosis: Navigating a New Normal
Receiving a diagnosis is both a relief and a challenge. I call this my “bittersweet” moment; I finally had a name for what ailed me but I had anxiety about what the future held for me. You may finally have a name for your symptoms, but it often comes with complex emotions—fear, grief, or even disbelief. This is also a critical time to advocate for yourself to ensure you understand and are comfortable with your treatment plan.
Ask questions like:
“How do we know this is the correct diagnosis?”
“What are the treatment options, and what are their potential side effects?”
“What should I do if I feel worse on this medication?”
“Are there alternative or complimentary therapies that I can use alongside pharmaceutical options?”
Understanding your treatment plan and feeling confident in it is crucial. If something doesn’t feel right—whether it’s a prescribed medication or the way a healthcare professional communicates with you—speak up. Your voice matters, and addressing concerns early can prevent complications or unnecessary discomfort.
Practical Tips for Self-Advocacy in Medical Settings
Advocating can feel intimidating at times, especially when faced with busy doctors, unfamiliar terminology, or the emotional weight of your condition. However, effective self-advocacy is about preparation, communicating clearly and being persistent, rather than being loud and/or aggressive. By taking small but deliberate steps, you can ensure your concerns are heard and your needs are met. Remember, you are the expert on your own body; you know when something feels off from your baseline and speaking out in a kind yet firm way is your greatest ally when it comes to shaping your medical care.
Here are some actionable steps to help you better advocate for your health:
Come prepared: Bring a notebook or document within your cell phone with questions and notes about your symptoms. Write down the doctor’s explanations to refer to later. If you are in a flare or very ill, it may be easier to ask the doctor if you can voice record so you can pay attention in the moment and have the recording as a backup.
Ask for clarification: If medical jargon or instructions are confusing, don’t hesitate to say, “I don’t understand. Could you explain that in simpler terms?” Personally, when there was a new diagnosis or medication discussed during one of my treatments, I would try to reiterate what was said to me to make sure I understood. I found in most cases, the doctor would explain in even more detail to ensure I understood everything.
Be assertive, not aggressive: Use “I” statements to communicate concerns, such as, “I’m worried this medication is causing new side effects.”
Bring an advocate: If you are too ill to advocate for yourself or you struggle with speaking out in a medical setting, bring a trusted friend or family member to appointments. They can help ask questions or clarify information. I find this is especially helpful when I am admitted to the hospital and often too ill to be on top of my own care 24/7.
Request copies of records/sign up for MyChart: Stay informed by requesting test results and doctor’s notes. These documents can be invaluable for second opinions or tracking your medical history.
Follow up: If you don’t hear back about test results or referrals, don’t hesitate to call or send follow-up messages through the patient portal. Doctors and medical teams are dealing with countless patients at once; persistence is a key part of advocacy.
Building Confidence Over Time
Self-advocacy is a skill that improves with practice and experience. Over time, you’ll learn to trust your instincts and become more comfortable navigating the healthcare system. This confidence often grows as you better understand your diagnosis, your body, and your needs.
Remember, advocating for yourself is not just about securing the right care—it’s about taking ownership of your health journey. You deserve to be heard, respected, and supported every step of the way.
About the Author:
Marisa Zeppieri is a former journalist, Mrs. New York 2015, author of the award-winning memoir, Chronically Fabulous, and the founder of global 501c3, LupusChick. Originally from New York, she currently calls the mountains of the Carolinas home, where she enjoys cooking, reading, and painting.
