Living with Postural Orthostatic Tachycardia Syndrome (POTS) can be overwhelming. The condition is still under-recognized, which often means patients spend years searching for answers and facing dismissal or misunderstanding along the way. Because POTS is complex and not widely taught in medical schools, patients frequently find themselves in the role of educator. That’s where self-advocacy becomes essential.
Advocating for yourself is not about being pushy or difficult—it’s about protecting your health and quality of life. Speaking up takes practice, but the more you know, the more confident you’ll feel. This guide explores practical strategies to help you advocate for your needs in healthcare settings, the workplace, and everyday life.
Why Self-Advocacy Matters for POTS
POTS is often misunderstood and misdiagnosed. Symptoms such as dizziness, rapid heart rate, fatigue, and brain fog can be mistaken for stress, anxiety, or simply “being out of shape.” Patients may encounter providers who are unfamiliar with dysautonomia, leaving them feeling unseen.
This is why self-advocacy is so important. By learning how to clearly explain your symptoms, ask for what you need, and request accommodations, you become an active partner in your care. Self-advocacy doesn’t guarantee instant results, but it improves the chances of receiving timely, effective support.
Strategies for Advocating in Healthcare
Bring Written Notes
Doctor visits can feel rushed, and brain fog makes it easy to forget details. Bringing written notes ensures you don’t leave out key information. Write down your main concerns, recent changes in symptoms, and any specific questions. A short, organized list helps both you and your provider stay focused.
Track Symptoms
Keeping a symptom diary helps you recognize patterns and provides objective information. Note the time of day, activity, hydration level, and how symptoms felt. Over time, this record can highlight triggers and show how treatments are working. Sharing this data with your doctor makes it easier for them to see the bigger picture.
Ask Direct Questions
Don’t hesitate to ask providers to clarify their reasoning or explain treatment options. Simple, direct questions like “What does this test look for?” or “What lifestyle changes might help my condition?” signal that you are engaged in your care. If a suggestion doesn’t make sense or seems inconsistent with your experience, ask for more details.
Share Reliable Resources
Because many providers have limited exposure to POTS, bringing reliable resources can help. Reputable organizations such as Dysautonomia International or peer-reviewed research articles offer credibility. Framing it as “I found this resource helpful, would you be willing to take a look?” can encourage collaboration.
Advocating at Work or School
POTS affects more than medical appointments—it shapes daily life. Advocating for yourself at work or school may involve requesting adjustments that make symptoms more manageable.
Requesting Accommodations
Common workplace accommodations include flexible schedules, the ability to sit during tasks, access to water or electrolyte drinks, and temperature control when possible. At school, this might mean extended time for tests, permission to stand or move during class, or rest breaks between activities. These requests are not about special treatment—they are about leveling the playing field so you can perform at your best.
Explaining POTS Simply
Colleagues, supervisors, and teachers may not understand medical jargon. Explaining POTS in simple terms helps others grasp your needs. For example: “POTS affects circulation, so I sometimes get dizzy or lightheaded when I stand. Taking short breaks to drink fluids helps me stay steady.” A clear, straightforward explanation builds understanding and reduces stigma.
Knowing Your Rights
In many countries, laws protect people with chronic illnesses from discrimination at work or school. In the United States, the Americans with Disabilities Act (ADA) requires employers to provide reasonable accommodations. Knowing your rights gives you confidence to speak up when your needs are questioned.
Building Confidence Through Knowledge
Confidence grows as you learn more about POTS and how it affects you personally. Reading about the autonomic nervous system, understanding treatment options, and connecting with support communities can all strengthen your voice.
The more you know, the easier it is to explain your condition to others and to advocate for effective care. Patients often find that their first attempts at advocacy feel intimidating, but over time, speaking up becomes second nature. Knowledge empowers you to move from passive patient to active partner.
Overcoming the Fear of “Being Difficult”
Many people hesitate to advocate for themselves because they don’t want to seem demanding. But self-advocacy is not about creating conflict—it’s about protecting your health. You have the right to clear information, respectful treatment, and reasonable accommodations.
It may help to reframe advocacy as teamwork. You’re not fighting against your doctor, employer, or teacher—you’re working with them to find solutions. Advocating calmly, with preparation and clarity, communicates that you’re serious about your health and committed to improving your situation.
Finding Support in the Process
Advocacy doesn’t have to be done alone. Family members, friends, or patient advocates can accompany you to appointments, provide encouragement, or help explain your condition. Online and local support groups are also valuable, offering tips from others who have navigated similar challenges.
Sharing strategies with the POTS community reduces isolation and builds collective strength. When one person speaks up, it becomes easier for the next patient to be heard.
Final Thoughts
Living with POTS requires resilience, and part of that resilience comes from learning to advocate for yourself. Whether you’re educating a doctor, requesting workplace accommodations, or simply explaining your needs to friends, self-advocacy is a tool that protects your health and strengthens your confidence.
Remember that advocacy is not about being difficult—it’s about ensuring your voice is heard in a system that may not always recognize your condition. Bringing notes to appointments, tracking symptoms, asking clear questions, and requesting reasonable accommodations are practical steps that make a real difference.
Confidence grows with knowledge. The more you learn about POTS, the more prepared you’ll be to explain, request, and assert what you need. Advocacy is a skill, and like any skill, it gets easier with practice. By speaking up, you not only improve your own quality of life—you also help pave the way for others living with POTS to be recognized, supported, and understood.
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