What to do when you don't feel heard

Lupus Foundation of America

Resource Content

Joint pain not connected to any injury. Headaches. The strange habit of forgetting where you’re headed once you’re in the car. As people with lupus know all too well, mysterious symptoms that appear and disappear are hallmarks of the disease. But when you’re seeing a doctor who isn’t familiar with lupus, all of these issues can sound like, well, a long list of complaints that just don’t make sense. That’s why, sometimes, a doctor may say, “I think I need to refer you to a mental health practitioner.”

But you know your own body, and the symptoms you’re describing are real. 

So, what do you do?

  • A) Scold the doctor for not believing you, 
  • B) Say nothing, but find another doctor, or 
  • C) Politely but firmly insist that your symptoms are not all in your mind, and ask for further evaluation.

We hope you choose C, and here's why.

Trust is essential in the doctor-patient relationship

In an article on doctor-patient relationships, T. Stephen Balch, MD, FACP, of Atlanta, writes, “One of the most valuable attributes a physician can have is the ability to listen to his patients... I feel that it is incumbent upon patients to feel not only justified, but obligated to be sure their physician is listening to them. It is also extremely important to have a physician who will be interested enough in your welfare to be sure to treat you as a partner in your care, rather than as a passive subject.”

Robert Katz, MD, a practicing rheumatologist in Chicago, adds, “The key to a good therapeutic relationship is kindness on both sides. It may be your doctor’s ‘fault’ with respect to communication and not listening in an unhurried way, but you need to be open to further discussion and questions, and try to avoid anger, which doesn’t move the ball forward. If you don’t understand or disagree or feel brushed off, a pleasant—but not defensive—response is appropriate.”

To quote a classic New England Journal of Medicine editorial: “Mutual confidence between physician and patient is a large element in the effectiveness and the economy of health care. As a patient, you can and should be the doctor’s greatest ally.”

We heartily agree.

So the next time you feel a doctor is subtly, or not so subtly, saying your symptoms are all in your mind, take a deep breath and calmly respond with option C. You may find you feel empowered, and when you live with an unpredictable disease like lupus, that’s a wonderful thing.