After years of having to navigate the healthcare system herself, Kate offers some valuable advice and her greatest tips and tricks she discovered through the process.
It has now been two years since I was diagnosed with a Chiari malformation, a genetic condition where the brain tissue extends into the spinal canal. Getting this diagnosis was no easy task, it was a brutal adventure that forced me to learn how to navigate the healthcare system over the last 3 years of my life. Had I received my diagnosis earlier, my comorbidities may not have become so severe. The dismissal I received from the healthcare system left me, like it leaves many, to fend and fight for myself. As a chronic illness warrior, I have learned the importance of being able to advocate for myself. However, I also know how difficult it can be.
Below are some of my favorite tips and tricks to use to ensure you are listened to by your care team. I hope this will allow you to fight for yourself, find answers, and receive respect from your providers.
1. For first appointments (and others if needed), collect and bring all your relevant medical records.
This should include past scans, test results, and old doctors’ notes if they are still relevant.
You can choose to carry paper copies of your records and organize them in binders or folders or you can carry records digitally to save space. You can store digital records on your phone or computer in excel sheets, word/google documents, pdfs, or personal health apps like Guava's, my preferred method, on your phone or tablet. Digital records can be easier for you and your doctors to navigate and find information quickly.
2. Prepare detailed notes for each doctor’s appointment.
Always turn to your notes app or a symptom logging app like Guava on your phone when an important symptom occurs. You will be able to write the most descriptive information at that exact moment. Assume that if you don’t write down your thoughts then and there, you will forget them!
This can be chronologically, by symptom, etc. The main point of coming in with organized notes is that it allows for more details so you can get the most information possible across in a condensed amount of time.
- Test results
- Future testing
- Future treatments
- Research you've done
- Anything else!
3. Trust your gut.
Before you speak with your doctor, take deep breaths. Remind yourself that it is your body, and you know your body best. You are allowed to speak up for yourself; they do not hold that power over you. Confidence is a huge part of advocacy.
4. Accept emotions that you may feel.
As patients, we are often left with no choice other than to be tough all the time. But it’s okay to show emotional moments to your practitioners. Emotion is normal, especially if you find out answers or, on the other hand, feel ignored by the doctor you saw. However, this is why being prepared for appointments is so crucial!
5. If possible, bring a companion to your appointment.
Bringing a friend, family member, or support person to your appointment can help make the emotional process easier. They can also help to guide you through your list of notes, making sure you cover everything and ask all your questions.
6. Use technology to your advantage!
Throughout seeing your doctor, make sure to contact them about concerns you have through your MyChart, Healow, NextGen, Athena, etc. portal. Doctors typically take the time to look at messages you’ve sent since your last appointment in the few minutes before they see you so that they are prepared to talk about them.
A personal health app can be helpful for empowerment. You can use these apps to identify trends from test results and self-logging, to learn the terminology used in the medical field and better understand your own records, and to track baseline health values like your blood pressure or heart rate to spot abnormalities.
7. Create your own resources.
Part of advocating for yourself is creating your own solutions when the resources aren’t being provided for you. An example of this would be reaching out to a doctor that treated a condition years ago if you think it could be related to the new symptoms you are experiencing. It could also mean reading studies that have been done, joining Facebook groups to get a grasp on how other people have handled these situations, and lastly, tracking your health!
Whether you find yourself searching high and low for the answers or feel intimidated by a doctor each time you walk into an office, I urge you to use this guide. If I could make sure each reader takes just one piece of information away from this, I would want it to be that confidence is key.
Confidence, also means using your notes that you brought with you “to a T”, allowing a companion to step up for you, showing emotion, using resources, learning from your experiences, and building resources as you go. Overall, use your confidence to prove to your doctor that you deserve to be treated like a human being, not just another number in the healthcare system.