- Written by Claire Galloway Claire Galloway
Being sick is bad enough. When your illness is difficult to diagnose, it’s even harder. But when you’re sick, suffering from mysterious symptoms, and your doctor dismisses your concerns — and you — it’s worse still.
“Of course doctors can’t know everything,” says activist Claire Galloway, author of A Call to Mind: A Story of Undiagnosed Childhood Traumatic Brain Injury (Brandylane Publishers, 2017). “But when patients — often women — find their condition undiagnosed and have their concerns dismissed, it can be truly disorienting.
“Untrained in medicine ourselves, we rely on doctors to help us when we’re sick,” says Galloway. “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 initially feel humiliated to be discredited, but over time that humiliation grows into self-doubt.”
If you are struggling to make your doctor listen to your health concerns and take them seriously, Galloway says you can take action today.
These tips will help you advocate for yourself and your loved ones when you’re experiencing chronic or hard-to-diagnose symptoms.
Make a plan. As you notice symptoms, take the time to write them down; note the time of day and if there was an obvious trigger. Reread the notes to determine if there are correlations in time or activity day-to-day.
Take your notes and observations to your medical appointment, and prioritize your questions and concerns in order of importance to make the best use of time.
When you have an appointment, don’t go alone. “Bring your spouse, a family member, or neighbor who can corroborate the symptoms you are reporting,” says Galloway.
“Having a trusted companion in your corner will help you present a united front that will be more difficult for the doctor to dismiss. In some cases, hiring a professional patient advocate might be advisable.”
Keep an updated log that highlights important details. Include a timeline with important dates, symptoms, doctor and hospital visits, and new prescriptions.
Email it to yourself whenever you update it and keep a few hard copies to hand to doctors. Mark key words in bold to make it easier for the doctor to scan items of importance.
Do your own research. Go to the library or go online to learn all you can about your (or your loved one’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.
Try to maintain composure. Staying calm during your appointment and presenting your concerns in a quantitative and objective manner, rather than emotionally, will help.
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.
Repeat yourself when necessary. “Speak up, even interrupt, during your allocated short appointment time,” says Galloway. “Make sure your concerns are being heard correctly and understood. Don’t be embarrassed to repeat yourself.
“Ask questions that reflect concern, like: ‘How will this medicine or treatment help?’ Or, ‘Why is my loved one not getting this treatment?’”
Make sure you understand instructions and the diagnosis. Repeat back your understanding of what the doctor is saying, so they can correct you if you have misunderstood.
If you feel uncomfortable, say so. If your doctor is being condescending, you can speak your mind. Simply say, “I’m uncomfortable with the way you are speaking to me.”
Ask for access to your medical records. You have the right to review your medical records (with a few exceptions) through the Health Insurance Portability and Accountability Act (HIPAA), but these can be difficult to obtain.
Some doctors maintain access through an online patient portal, though sometimes the doctor’s notes are not included. You can also go through a patient records department and might be charged a fee.
If you think the information in your records is incorrect, HIPAA gives you the right to request amendments to your records. Some doctors may have left a note in your records that could be hindering you from being taken seriously.
Even if a note by a previous doctor can’t be taken off, knowing it is there gives you the opportunity to explain and discuss it when you go in for an appointment with a new doctor.
“If you feel like your doctor isn’t taking your concerns seriously, it’s crucial not to give up or start doubting yourself,” concludes Galloway.
“You know your body better than anyone else, and you have every right to fight for the correct diagnosis. These tools can help you keep advocating for yourself or for someone you love.”
Claire Galloway is the author of A Call to Mind: A Story of Undiagnosed Childhood Traumatic Brain Injury. She has been advocating for greater awareness of closed-head traumatic brain injury in children since 2008. www.acalltomindtbi.com