It’s incredibly frustrating to leave a doctor’s office feeling like they didn’t listen or understand your concerns. You may feel disheartened, helpless or frustrated, especially when dealing with chronic symptoms or a condition that severely impacts your quality of life. If this sounds familiar, you’re not alone. If you don’t feel like your doctor is helping or listening to your needs, there are steps you can take to advocate for the medical attention and care you deserve.

1. Prepare for Your Appointment

Before your appointment, jot down your symptoms, questions, and any concerns you want to discuss. Having notes can help you stay on track during your visit and ensure you cover everything on your list. Consider bringing a symptom diary that describes when your symptoms occur, how severe they are, and any potential triggers. These details can provide your doctor with a clearer picture of your condition.

2. Be Honest and Direct

Be as honest and direct as possible with your doctor when sharing your symptoms and their impact on your life. Use specific examples to illustrate your points. For instance, instead of saying, “I feel tired,” try, “I feel so exhausted that I can’t get through my workday without multiple breaks.”

3. Ask Questions

Always ask questions if you don’t understand something your doctor says. It’s important to fully grasp your diagnosis or upcoming tests, treatment options, and next steps. You have the right to understand your own health and the plan for managing it.

4. Bring a Support Person

It can sometimes be helpful to bring a friend or family member to your doctor’s visit. They can provide moral support, help you remember the details of the discussion, and even advocate on your behalf if you feel overwhelmed.

5. Request a Longer Appointment

If you feel rushed when seeing your doctor, consider requesting a longer appointment. Some practices offer extended visits for patients with complex issues or multiple concerns. This extra time can give you and your doctor more time to discuss the details of your situation.

6. Advocate for Yourself

You are your own best advocate. Don’t be afraid to speak up if your doctor doesn’t seem to listen or understand you. You can say something like, “I feel like my concerns aren’t being fully addressed. Can we explore this further?” It’s okay to be assertive about your health and your needs.

7. Seek a Second Opinion

If you still feel ignored or unheard, your condition worsens or stays the same despite treatment, or your symptoms are dismissed without thorough investigation, it may be time to seek another opinion with a specialist. A fresh perspective from a different healthcare professional who has specific knowledge can be invaluable, especially if your condition is rare or complex.

8. Consider Rare or Genetic Diseases

A doctor can’t possibly know every disorder or condition, particularly when it comes to rare or genetic diseases. (Researchers estimate that there are over 10,000 genetic disorders!) If your symptoms don’t fit neatly into a common diagnosis, it is worth exploring the possibility of a rare or genetic disorder. This is especially true if other family members have had similar health issues or your disease lacks the standard risk factors or presentation.

You can ask your doctor for a referral to a medical genetics practice or seek one out on your own to request a genetic evaluation. You can learn more about genetic conditions on our blog, including 10 red flags that may suggest a genetic condition. Organizations like the National Organization for Rare Disorders (NORD) and Genetic and Rare Diseases Information Center (GARD) also offer extensive patient resources and support. 

9. Explore Patient Advocacy Resources

There are many organizations and resources dedicated to patient advocacy. These can provide support, information, and sometimes even legal advice if you are struggling to get proper care. The Patient Advocate Foundation is one of the best-known organizations in this area.

10. Take Care of Your Mental Health

Feeling unheard by your doctor can take a toll on your mental health. It’s critical to address this and seek support if you need it. Talking to a mental health professional can help you manage the stress and frustration that comes with navigating complex health issues.

Everyone Deserves Personalized, Compassionate Care

You deserve to be heard and to receive compassionate, comprehensive care. Advocating for yourself can be difficult, especially when you aren’t feeling well. However, speaking up is worth the effort. Your health is too important to be sidelined — keep pushing until you get the care you need. Stay strong, and remember that you are not alone in this journey.

To talk with the clinical genetics team at SequenceMD, a practice founded to support people with rare and genetic diseases, call us at 303-832-7109 or send us an email anytime.