5 steps you can take to advocate for yourself with doctors

Getting sick or having a sick child is bad, but what’s worse is to not get help from doctors. Have you ever experienced a situation, beyond a simple cold, when you didn’t feel well and went to see a doctor, only to hear that you’re OK? Is your child not feeling well and has seen dozens of doctors, but they all say there is nothing going on with him? Have you ever experienced frustration trying to get medical relief for whatever is going on with your body, but instead were told that it must be just in your head?

There are many of us who experienced various kinds of dismissal from doctors. It can be extremely exasperating to be heard by medical practitioners. From my own experience trying to get diagnosed since I was 14 years old, diagnosing one of my kids with a rare genetic condition and still going through an experience diagnosing same child with another possible rare condition, I want to share five simple steps you can take to advocate for yourself and members of your family.

1. Become your own doctor and learn about disorders.

It may sound crazy. Afterall, doctors spend more than a decade going through the hell of medical school and residency, but do not underestimate yourself, a desperate patient looking for answers. There are multiple reasons doctors may overlook your condition, not test for it correctly, or simply be unaware of medical discoveries and new research. Doctors are surprisingly bad at reading lab results. Subclinical situations are not usually taken care of, meaning, if you’re just slightly out of the normal range, you won’t be treated or get further testing done. There’s a 17-year gap between clinical evidence and change in patient care. There are rare conditions that a lot of doctors have never seen and briefly heard of in medical school. Doctors get so busy that they have no time to continue to do constant medical research and follow new medical findings.

Despite the fact that doctors hate it when patients Google, the internet is your friend. Start researching the symptoms, read medical articles, look at pictures of various conditions, possibly run your own lab tests — tests are available nowadays for a decent price. Present all of your findings to the doctors you are going to see. Just don’t mention that you Googled them.

2. Join support groups for medical conditions.

When you start suspecting one or another condition, it is a good time to join online support groups for people with that condition. Various support groups carry a lot of helpful information about how to get diagnosed. People will share their journeys, doctors who heard them and tested them, their financial struggles and possible resources for financial help from various organizations, and love and support to you on your path. Sometimes what we need is to be heard, seen and accepted without judgment, and that is exactly what you can find in those support groups.

3. Organize your findings and lab results.

If you experienced not getting help from doctors — being dismissed by them, saying that your symptoms are just in your head or that your results show you’re OK — be strategic. Spend time to organize your findings. Print medical articles and highlight portions that prove your suspicions or describe testing protocols. Type all of your test results by date and type, with ranges mentioned on a separate piece of paper. Type a short, precise story of your path trying to get diagnosed with a list of all your symptoms. Be serious and professional; show that you know what you’re talking about to be taken seriously.

4. Bring a white man to doctors’ appointments.

Yes, you’re reading this correctly, and I’m not losing my mind. Medical bias is a real thing. There have been multiple studies done proving that women were more likely to be inadequately treated by healthcare providers, and women of color, lesbian, and transgender women more so. If you feel you are being dismissed because of medical bias, ask a friend or a coworker, a white male, to accompany you to a doctor’s appointment.

5. Trust your intuition and do not give up.

Intuition is everything. Your intuition will always take you where you need to go. You have to listen to yourself and your body. You and only you know your reality. Do not let doctors deny your reality just because they don’t see anything merely by looking at you or your basic tests. Do not give up. If you saw a doctor who dismissed you and didn’t give any answers, find another one and another one. Some conditions are rare, and people may see dozens of doctors and spend years to get correctly diagnosed. The more people who continue to fight for their health, the more information gets out there and becomes available to others in a pursuit of getting well.

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