Being sick is bad enough. When your disease is difficult to diagnose, it becomes even more difficult. But when illness manifests as mysterious symptoms and your doctor dismisses your concerns – and so do you – you find yourself in the worst of all possible worlds.
When your doctor won’t listen
Doctors can’t know everything, but when patients (often women) discover their condition has gone undiagnosed and their concerns are dismissed, it can be truly disorienting. For twenty years—from childhood to my thirties—I suffered from undiagnosed ectopic atrial fibrillation, which caused me to pass out in dance class or pass out after a tennis match. My doctors believed me at first, but after a few tests showed it was just a rapid heartbeat, they blamed it on female emotions.
Years later, my toddler son, Luke, was hit hard on the head by a playground swing and overnight went from an easy-going personality to one of over-excitement and anxiety. I knew immediately that the impact of 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, failed to recognize the traumatic brain injury lurking underneath.
Sixteen years passed 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 recovery help, but without the proper diagnosis, he received no help at all. Ultimately, Luke failed at everything despite having a high IQ and decided that suicide was an easier route than living without hope.
Because we have no medical training ourselves, we rely on doctors to help us when we are sick. Usually that system works. And most of the time our bodies would heal even without help. But if they don’t, we need these doctors, and we trust them to believe what we report to them. If they don’t, we may initially feel humiliated at being discredited, but over time that humiliation grows into self-doubt.
It’s true that doctors are stressed, pressed for time, and operating within a changed and largely broken system. They can’t necessarily order tests that might be helpful unless approved by the insurance company. They work for large hospital companies rather than for themselves, and often their hands are tied, preventing them from spending extra time or money on a difficult-to-diagnose case. So, what can you do if you know something is very wrong and the doctors won’t listen or take your concerns seriously?
If you’re having trouble getting your doctor to 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 if you are experiencing chronic or difficult-to-diagnose symptoms. They can also be effective at times when you are advocating for the health of someone else, such as your child or an elderly parent.
Make a plan. Take the time to write down the symptoms as soon as you notice them. Note the time of day and whether an obvious trigger caused it. Reread the notes day by day to determine if correlations in time or activity become apparent. Take your notes and observations with you to medical appointments and arrange your questions and concerns in order of importance so you can make the most of your time.
Don’t go alone. Bring your spouse, a family member or neighbor who can confirm your reported symptoms to your appointments. Having a trusted companion in your corner provides a united front that makes your symptoms harder for the doctor to ignore. In some cases, it may be advisable to hire a professional patient advocate.
Keep a log. Highlight important details and keep them up to date. Add a timeline with important dates, symptoms, doctor and hospital visits, and new prescriptions. Email it to yourself when you update it and print a few paper copies to give to doctors. Make key words bold so that important items stand out to the doctor.
Do your own research. Go to the library or go online to find out everything you can about your (or your child’s) symptoms. Make copies of supporting evidence. You can also contact local or national medical authorities to gather substantive information relevant to your concerns. Take this documentation with you to your medical appointments as supporting evidence.
Keep calm. Instead of letting your emotions take control, remain calm during your appointment and present your concerns in a quantitative and objective manner. When you feel frustrated at being rejected and ignored, take a deep breath to keep calm and refocus your energy on what’s important.
Speak your mind. Repeat as necessary (even interrupt) during the allotted short appointment time to ensure your concerns are properly heard and understood. Don’t be ashamed of repeating yourself. Ask questions that reflect concerns, such as: How can this medicine or treatment help my child? Or why doesn’t my child receive this treatment?
Check information. Make sure you understand the instructions and diagnosis. Reiterate your understanding of what the doctor says so that any misunderstandings can be corrected.
Speak your mind. If you feel uncomfortable, say so. If your doctor is condescending, simply say, “I’m not comfortable with the way you’re talking to me.”
Get access. You have the right to access your medical records (with some exceptions) through the Health Insurance Portability and Accountability Act (HIPAA), but sometimes it can be difficult to obtain. Some physicians maintain access through an online patient portal, but some systems do not display physician notes. The patient records department offers another access route, but charges may apply.
Address errors. If you believe the information in your records is incorrect, HIPAA gives you the right to request changes to it. Take this opportunity to clarify any errors in your administration. A note that a doctor leaves in your file can ensure that you are not taken seriously. Even if a note from a previous doctor cannot be removed, knowing it gives you the opportunity to explain and discuss the problem when you see a new doctor.
This process takes time, but certainly produces results. You are responsible for your medical care; It is important that you have complete information to assist you. If you feel like your doctor isn’t taking your concerns seriously, it’s crucial that you don’t give up or start to doubt yourself. You know your body better than anyone and you have every right to fight for the right diagnosis. These tools can help you stand up for yourself or someone you love. Whatever you do, never give up on seeking the treatment and care you deserve.