When I am among the trees, Especially the willows and the honey locust, Equally the beech, the oaks and the pines, They give off such hints of gladness I would almost say they save me, and daily. Excerpt, "When I Am Among The Trees" by Mary Oliver We live in a world...
Advocating for Care and Safety Within Chronic Illnesses
Creating a Medical Advocacy Plan
Calling doctors, sitting on waitlists, undergoing test after test, and experiencing unpredictable ebbs and flows in your health are just some of the things that folks with chronic illnesses manage as a part of daily life. Experiences of being unheard, dismissed, or misunderstood can leave people with anxiety and fear that makes navigating medical care that much harder. How do you move from this space to one of hope?
It’s an unfortunate reality that healthcare is not always attuned with what you need. Many folks who manage chronic health conditions have experiences of being dismissed or having your autonomy violated during appointments, sometimes leading to anxiety, depression, or medical trauma.
Balancing these heavy burdens with the need to continue seeking care can feel overwhelming, especially on top of uncomfortable or confusing symptoms.
Still, there is hope. By reflecting on your needs and experiences, exploring options, and taking time to intentionally structure care, healthcare can be approachable. A trauma-informed and accessible way to do this is by creating a Medical Advocacy Plan. A Medical Advocacy Plan focuses on adding clear structure and boundaries around stressful healthcare experiences in order to maintain your autonomy in these settings. Here are some steps you may take when creating a safety plan, either on your own or with the help of a therapist or other trusted support person.
Empower Your Medical Journey
Discover how to take control of your healthcare experience with confidence and clarity. Learn strategies to communicate effectively with your providers and build a support system that works for you.
Finding Your Voice
Want to Dive Deeper?
After reading this article, connect with a Star Meadow Counseling therapist to process your experiences with medical care and chronic illness.
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Think About Your "Why"
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Build a Support Structure
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Find Comfort in the Moment
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Know Your Boundaries
1. Think About Your "Why"
What do you hope to achieve in this interaction? Are you scheduling an appointment, reporting new symptoms, or seeking a second opinion? When you wrap up this interaction, what do you want to make sure you accomplished or expressed to your care team? Take a moment to write down a few sentences about your goals. Aim to keep it concise, simple, and focused on your own actions. For example, if I want to talk about how a new medication isn’t a great fit, I might write “I want to tell Dr. C that my biologic injection is making me feel tired, and that I am having persistent symptoms.” However, I probably wouldn’t write “I want my doctor to change my medication during this appointment.” Focusing on what you want to communicate versus what you want to hear from your team can help reinforce your sense of autonomy and allow for collaboration with your providers.
2. Build a Support Structure
When preparing for a call, procedure, or appointment, it can be helpful to think beyond the task itself. Think about what you can do before and after the appointment to create support that works for you. Are you nervous about calling your office’s nurse line? Think about the leadup- what makes you feel most at ease? Do you need to put a time in your calendar to make this call? What about calming your nervous system before dialing the number- can you have a snack, meditate, or watch a distracting show for a few minutes? Similarly, think about what happens when you hang up your phone or leave the appointment. Can you ride home with a loved one, take a walk around the neighborhood, or engage in your favorite coping skills right after you wrap up? If not, can you schedule a time to unwind soon? Write these things down to ensure that when you’re feeling overwhelmed, you don’t have to think of all of these things in the moment.
If you’re noticing that it’s challenging to identify skills or resources to use as support, it may be helpful to begin working with a therapist who can help you explore options.
3. Find Comfort in the Moment
Just as regulating your nervous system before and after are vital but often-skipped steps, so too is taking care of yourself while you’re engaging in healthcare tasks. Notice what you’re feeling most concerned about, and identify ways to respond to those things. Engage in sensory activities like using fidget toys, wearing calming scents (check your providers’ perfume policy if you’re in person), wearing tinted glasses or turning down lights in your home, and more. Can you bring a loved one to appointments, or request a medical chaperone? What about sitting in a comfortable chair in a private space while making a difficult call or checking test results? Is the service you’re accessing aware and accommodating of any disabilities you have? Taking steps to ensure comfort can enhance your body’s sense of safety during stressful situations.
4. Know Your Boundaries
It’s time to talk about consent and autonomy. Unfortunately, there are times where consent is violated and trust is broken in relationships, and this can include medical professionals. It is never your fault if this happens to you. Having clear boundaries around what is and is not okay can help you react when you feel unsafe. Take a moment and think about what these boundaries are for you. What physical contact are you okay with your provider having with you, both one-on-one or with others present? Do you want your provider to check in before touching your body or administering treatment? What information do you want them to say out loud and what do you prefer to keep in writing? What about explaining the reason behind different interventions?
Knowing where exits are, sitting closer to doors or personal belongings when possible, and having an accessible way to contact help or support can be reassuring and safety affirming. This can be especially important if you are someone who has experienced trauma that may be triggered in these situations. Feel empowered to talk to your provider about your concerns and boundaries so that they respect them, and reinforce them when you need to. You may choose to share your written Medical Advocacy Plan plan with your doctor in order to communicate those boundaries. Other ways to directly communicate your needs may be writing an email or letter to your provider, requesting a phone consultation prior to your first appointment, asking for requests to be noted in your medical chart, or having a conversation at the beginning of appointments.
If you feel that you have experienced medical trauma or want support with these topics, it may be important that you seek support with a therapist. Therapists can assist you in processing your experiences, identifying next steps, and building up your sense of safety and personal autonomy.
Communicating Your Boundaries
The Importance of Setting Boundaries with Medical Professionals
Medical care and safety are not one-size-fits-all. What makes you feel safe and successful may be very different from what another person needs. Taking time to understand yourself and setting up structure around your needs can have a huge impact on your experiences. A Medical Advocacy Plan can be a great tool to create this structure and care for your future self. Additionally, it is important to remember that you do not have to go through this alone. Seeking support from loved ones can be helpful, as well as beginning work with a therapist on the creation of this advocacy plan or other topics you want support with. If you would like to talk with a Star Meadow counselor about your experiences with medical care and chronic illness, please reach out and request an appointment.
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