One of the most difficult things I have to do as a patient is advocate for myself. Anxiety sets in, causing the waiting room wiggle (you know, when you bounce your foot while waiting?) and causing me to forget even the most basic details, such as what day it is. Past medical traumas make everything feel both too sharp and too foggy. In the midst of it all, I am expected to actively engage in my care and make informed decisions. Here are five practical strategies I use to prepare to advocate for myself in healthcare settings.
1. Prioritizing Needs
I start preparing for appointments by writing down exactly what I am expecting to address during the visit. I choose my top three needs and write them in order of importance in a notebook that I bring with me to every appointment. Having them physically in front of me helps. I prefer pen and paper, but I’ve used apps on my phone successfully in the past too, like the Notes App on my iPhone. The key is to take the time to articulate and prioritize my needs and expectations.
Let’s use a hypothetical visit to my Headache Specialist as an example. My priority list might look something like this:
- Increased Migraine attack frequency
- Medication side-effect? (Nausea)
- Magnesium supplement (glycinate)
Short, information dense phrases that I can glance at to be reminded of what I wanted to address work best for me. But honestly, sometimes I write out entire sentences so that I can fall back on a “script” if I need to.
2. Preparing Questions
Once I have my needs prioritized, I prepare questions. I want to make sure I’m ready to discuss my needs, and a good way to guide discussion is through open-ended questions. I also find that my thoughts evaporate like water on hot concrete when I’m stressed, so I write many of my questions out in full sentences with little notes to myself added on to remember why I’m asking.
Going back to my hypothetical appointment above, my questions might be:
- What other treatment options do I have? CEFALY® device?
- What can I do to help reduce nausea as a side effect of this medication? With dinner instead of lunch?
- Can I try switching to magnesium glycinate? (Improved absorption?)
I also often have some general questions that I want to make sure I remember to ask, such as:
- Where can I learn more about this treatment?
- What potential side-effects should I be aware of?
- When should I follow-up with you next?
Questions are powerful, so I make sure I’ve thought of at least one per need.
3. Anticipating Misunderstandings
Misunderstandings are a natural part of communication, so it is reasonable to expect misunderstandings to happen in healthcare settings too. One way I prepare for potential misunderstandings is to jot down notes about why something is important to me.
I’ve found that specific examples help clarify situations. For example “The Migraine attacks are making it difficult for me to do even basic household chores like making dinner or emptying the dishwasher.” tends to work better than “The attacks are interfering with life.” Both are true. But one better explains why I am seeking help but simultaneously inferring a goal of treatment (i.e. I want to be able to make dinner and empty the dishwasher).
I also prepare to misunderstand the healthcare provider. To help ensure I’m understanding what I’m being told, I use a technique called recasting: I say back what I’ve heard. This helps ensure that I’ve both captured and understood key pieces of information from the appointment. I also try to bring a trusted friend or family member with me. They not only provide moral support while I advocate for my needs, but also an extra pair of ears to catch information I might miss.
4. Preparing to Disagree
I come to medical professionals for their knowledge and advice, but ultimately I alone can make the decision about what is best for myhealth. Sometimes this means disagreeing with what I’m being told.
I hate doing it though. I fear being labeled as “difficult” or “non-compliant” (hello, medical trauma). Therefore, I write two phrases* in the margins of my planning:
I hear you and appreciate your perspective, but this is what I am experiencing and I need help.
This is what I want and need right now.
5. Becoming Expert
Finally, I become an expert in my own health, so that I am better equipped to discuss my needs and experiences. Learning about my diagnoses and treatments allow me to be better equipped to discuss my experiences, concerns, and goals.
Advocating for myself in healthcare settings is hard, but preparation helps. I hope sharing how I prepare helps you too!
*I got these phrases from a talk on medical gaslighting by Dr. Melissa Geraghty, Psy.D. in 2022. You can access her slides at PhoenixRisingWithDrG.com.
About the Author
Amanda Ingrassia is the Founder and Editor in Chief ofMy Chronic Brain, a non-profit magazine devoted to the unique needs of Chronic Migraine patients. She lives with several chronic illnesses including Chronic Migraine, Gastroparesis, Hashimoto’s Disease, and more. Connect with Amanda on Instagram @JustBreatheMia!
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