Self-Advocacy in Medical Care
Created By Rainbow Health Initiative
When medical appointments fail to meet expectations, there can be a sense of frustration. While this can feel overwhelming, there are multiple ways to take back control and ensure your medical needs and concerns are being addressed. The first step is to take a deep breath and relax. Understand that you will reach a solution, even if the immediate moment feels beyond your abilities. Trust your reaction and emotion to the traumas you have experienced, use self-care, and then begin your search for help.
Options for action may vary depending upon the situation and relationship to the caregiver that you are having difficulties with. For example, you may want different approaches depending upon your relationship with the provider. Has this been an on-going, positive relationship but the provider continues to have problems with correct pronouns? Or is this an ongoing or new problem that includes multiple aggressions?
To respond to these varying layers, first ideas for taking control in present or ongoing situations will be addressed. Different avenues for self-defense and feedback within the provider’s office will also be reviewed. From there, legal options will be discussed and resources will be presented.
Handling Difficult Situations
If you have had a negative or unproductive meeting with a doctor, there are multiple ways to approach the situation. For an issue that is currently unfolding (for example, you are in the middle of talking, and a micro-aggression occurs),you can momentarily remind the provider that such language is harmful to you. Using a positive frame for your language can help diffuse tension, while avoiding escalation if the provider becomes defensive or confused. Remember that providers themselves may be uneducated about queer health, and need your help to understand how to best serve you.
If you had a problematic experience that you were unable to address at the time of the appointment, you can reach out afterwards to explain the difficulty either via phone or e-mail with your care provider. An example phone conversation is provided, as well as an example email.
Hello, thank you for calling A Doctor Office. This is An Assistant. How can I help you today?
Hello An Assistant, I am Concerned Patient. I had an appointment with A Doctor earlier this week. I am calling because I have a concern I would like to talk about.
Ok Concerned, thank you for calling. What is your concern?
This is hard for me to talk about. A Doctor only uses the name that is listed on my health insurance when referring to me. This is not my correct name, as I go by Concerned. I have tried to remind A Doctor several times during the last appointment, but nothing changed. This hurts me, and negatively impacts my health. I understand the need to have the name on file for insurance purposes, but I need to be respected and have my correct name used in the office.
I am very sorry you experienced that Concerned. I will put a note in your file as well as alert A Doctor to the issue now and before you come in again. Is there anything else I can do for you?
No, but I appreciate the help in resolving this. My next appointment is in February. When I call to confirm my appointment, I would also like an update on this. Will that work?
I can absolutely make sure an update is provided when you call to confirm your appointment, Concerned.
Thank you, An Assistant. I will talk to you again in February. Have a good day.
Pursuing Legal Action
For issues that are not resolved through routine approaches, or for encounters that are highly traumatic, taking legal action can be a viable option. This section will explore how to document negative experiences, how to reach out to organizations for help, and what to expect for your first contact with legal resources. While legal action can require large time contributions, planning sessions, tenacity, and monetary resources, many organizations offer help managing this process. Remember that if you become uncomfortable with how things are progressing, you can always stop the process. Your comfort comes first as you engage with trauma; remember this as you work towards solutions and always give yourself spaces to heal.
The most important step as you start to search for legal assistance is to have detailed records of the issues you have experienced. Being able to produce statements and proof of your history will benefit those helping you, and provide good groundwork moving forward. When making a personal medical record, using already available templates can help you know what to record. A visit planner is provided in this toolkit for tracking every medical visit and writing down the outcomes from each meeting. This planner can be used as a reference if you need to track negative experiences. Similarly, we also offer an incident record that you can use as a starting point for your work. Documenting interactions and being able to clearly communicate the issue will assist you in talking to advocacy groups.
Once you have set aside time to document your concerns, and feel that you have a clear understanding of both what happened, and what outcome you want to reach, you can reach out to advocacy groups. If you feel uncertain about your goals for legal action, advocacy groups can also help with sorting out your needs. There are multiple advocacy groups that can offer legal advice, and lawyers can also offer pro bono (free) work in some situations. Minnesota also benefits from good legal background or “precedent” that favors the rights of gender identity protection. When contacting advocacy groups, it is important to be candid and brief, so that they best understand your situation. Often, legal help groups can be very busy, and unable to help every case that comes to them. As a result, being able to quickly represent yourself will help gain more traction for your case.
If the advocacy group you contact is able to help and works with you, be prepared to have your first legal consultation. Often, first consultations are short telephone conversations simply going back over the negative experience(s) and next steps. Remember to keep in close contact with your support system as you go further with legal assistance and ask questions to ensure you understand every action you take.
If an advocacy group is unable to take on your case, you can contact another support group for help, or hire legal assistance on your own.
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