Being sick is bad enough. When your illness is difficult to diagnose, it becomes even harder. But when sickness manifests as mysterious symptoms and your doctor dismisses your concerns—and you, too—you land in the worst of all possible worlds.
When Your Doctor Won’t Listen
Doctors can’t know everything, but when patients (often women) find their condition undiagnosed and have their concerns dismissed, it can be truly disorienting. For twenty years—from childhood into my thirties—I suffered from an undiagnosed ectopic atrial fibrillation that caused me to pass out in dance class or heave after a tennis match. My doctors initially believed me, but after a few tests revealed what they thought was just a rapid heartbeat, they blamed my symptoms on female emotions.
Years later, my toddler son, Luke, was struck hard on the head by a playground swing and changed overnight from possessing an easy-going personality to one of excess agitation and anxiety. I knew immediately that the blow from the swing was the cause. But, because it was a closed-head injury with no outward signs, the pediatrician, and later two pediatric neurologists and several child psychologists did not recognize the traumatic brain injury (TBI) that lurked beneath.
Sixteen years went by before a third neurologist finally identified and confirmed the diagnosis of TBI. Throughout his school years, Luke was blamed for not reaching his potential. In reality, he desperately needed remedial help but without the correct diagnosis, he received no help at all. Eventually, failing at everything despite having a high IQ, Luke decided suicide was an easier route than living without hope.
Untrained in medicine ourselves, we rely on doctors to help us when we’re sick. Most of the time that system works. And, most of the time, our bodies would heal even without help. But when they don’t, we need these doctors, and we rely on them to believe what we report to them. When they don’t, we can initially feel humiliated to be discredited, but over time that humiliation grows into self-doubt.
True, doctors are stressed, pressed for time, and operating within a changed and mostly broken system. They can’t necessarily order tests that might be helpful unless approved by the insurance carrier. They work for large hospital corporations instead of for themselves, and often their hands are tied, preventing them from spending extra time or funds on a difficult-to-diagnose case. So, what can you do when you know something is very wrong and doctors won’t listen or take your concerns seriously?
If you struggle to make your doctor listen to your health concerns and take them seriously, you can take action today. These tips can help you advocate for yourself and your loved ones when you experience chronic or hard-to-diagnose symptoms. They can also be effective at times when you advocate for someone else’s health, such as your child or an elderly parent.
Make a plan. Take the time to write down symptoms as you notice them. Note the time of day and if an obvious trigger caused them. Reread the notes day-to-day to determine if correlations in time or activity become apparent. Bring your notes and observations to medical appointments, and prioritize your questions and concerns in order of importance to make the best use of time.
Don’t go alone. Bring your spouse, a family member, or neighbor who can corroborate the symptoms you are reporting to your appointments. Having a trusted companion in your corner presents a united front that makes your symptoms more difficult for the doctor to dismiss. In some cases, hiring a professional patient advocate might be advisable.
Keep a log. Highlight important details and keep it updated. Include a timeline with important dates, symptoms, doctor and hospital visits, and new prescriptions. Email it to yourself whenever you update it and print a few hard copies you can hand to doctors. Make key words bold so important items stand out for the doctor.
Do your own research. Go to the library or go online to learn all you can about your (or your child’s) symptoms. Make copies of supporting evidence. You might also want to contact local or national medical agencies to gather substantive information that matches your concerns. Take this documentation to your medical appointments as supportive evidence.
Maintain composure. Rather than letting your emotions take control, stay calm during your appointment and present your concerns in a quantitative and objective manner. When you feel frustrated in the midst of being dismissed and ignored, take a deep breath to maintain composure and refocus your energies back to what is important.
Speak up. Repeat yourself when necessary—even interrupt—during your allocated short appointment time to make sure your concerns are heard correctly and understood. Don’t be embarrassed to repeat yourself. Ask questions that reflect concern, like: How will this medicine or treatment help my child? Or, why is my child not getting this treatment?
Verify information. Make sure you understand the instructions and the diagnosis. Repeat back your understanding of what the doctor says, so any misunderstandings can be corrected.
Speak your mind. If you feel uncomfortable, say so. If your doctor is being condescending, simply say, “I’m uncomfortable with the way you are speaking to me.”
Get access. You have the right to review your medical records (with a few exceptions) through the Health Insurance Portability and Accountability Act (HIPAA), but sometimes obtaining them can be difficult. Some doctors maintain access through an online patient portal, but some systems do not display the doctor’s notes. The patient records department offers another route to access, but they might charge a fee for the service..
Address errors. If you think the information in your records is incorrect, HIPAA gives you the right to request amendments to them. Take advantage of this opportunity to clear up any mistakes you come across in your records. A note left by a doctor in your records could keep you from being taken seriously. Even if a note by a previous doctor can’t be removed, knowing about it gives you the opportunity to explain and discuss the issue when you begin seeing a new doctor.
This process takes time, but definitely pays dividends. You are in charge of your medical care; it’s important to have the full information available to assist you. If you feel like your doctor isn’t taking your concerns seriously, it’s crucial not to give up or start doubting yourself. You know your body better than anyone else and you have every right to fight for the correct diagnosis. These tools can help you advocate for yourself or for someone you love. Whatever you do, never give up on seeking the treatment and care you deserve.
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