Dear Perrie,
How do you advocate for yourself at doctors’ appointments and hospitals when you have been failed by the medical system before? (ie. missed diagnosis and now new problems are arising….)
Dear Reclaiming Your Voice,
This is such an important question, and I’m so glad you asked it! The truth is that many young adult cancer survivors experience medical mistrust. In the U.S., it’s not uncommon to encounter providers who are burnt out, overworked, and treat patients like numbers rather than people. Missed diagnoses, medical gaslighting, and difficulty trusting the system again are, unfortunately, experiences I have heard from many other young adult cancer survivors.
Despite that, we still have to advocate for ourselves. Recognizing and validating the real barriers and emotions that might get in the way is an important first step. Pushing through with a toxic positivity mindset isn’t very sustainable and can often leave folx feeling even more frustrated than before.
If you find yourself shutting down during appointments, you may need a way to come back into your body and stay present, using tools like mindfulness, fidgets, note-taking, or asking for follow-up appointments. If you find yourself overwhelmed, triggered, or angry in these appointments, you may need to practice deep regulation and communicating your concerns, even when big feelings are in the room.
A helpful tip, in any situation, is to start keeping an organizational system. You likely have access to a virtual chart, and if so, I would practice reviewing your medical notes, labs, and visit summaries before appointments. I’ve recommended to people in the past to have their own medical binder or notebook. But really, you can grab any piece of paper or even the notes section of your phone and jot down your thoughts and the top 5 questions you want to address in your next appointment. Organizing yourself this way can help you stay grounded in what is most important to cover in your appointments, even when you are feeling overwhelmed, scared, or tapped out.
It can also be incredibly supportive to bring someone with you to appointments when possible. Having a support person can be another great grounding tool and a way for someone to have your back when you need to speak up for yourself. If it’s not possible to have a support person, you could also ask permission to record doctors’ appointments so you can listen back to them later. Recording offers a way for you to review information and return to it, a helpful strategy if it takes time for you to process information.
It’s also completely okay to ask your provider to slow down. If something is confusing, or they are using a term you don’t understand, it’s okay to ask, “Can you explain that another way?” or “Can you walk me through your thought process as to why this test is the best option, or this other option isn’t a good idea?” Asking providers to clarify their reasoning and thoughts can help you to better understand your care and give you the opportunity to notice if your concerns are being taken seriously. If you find that you are consistently being dismissed, even after you’ve spoken up, then it might be time to pivot.
An important part of self-advocacy is remembering that seeking a second opinion or switching providers is not offensive; it is an act of prioritizing your needs. After all, this is your health! This is a normal and reasonable part of medical care for young adults with cancer or complex medical histories. Seeking another perspective or giving yourself permission to find a new doctor with whom you develop a better relationship does not mean you are difficult; it means you are taking your health seriously.
Finally, I want to acknowledge that rebuilding trust in medical spaces can take time. If you find that you are still struggling, I want to gently encourage you to reach out for therapy, community support, or other spaces where you can process these experiences. Medical trauma is real, and you deserve support in navigating the impact it may have had on your relationship with healthcare. Advocating for yourself does not mean you have to be perfectly confident or fearless. Sometimes it simply means showing up, asking the question anyway, and reminding yourself that your experiences in your own body matter.
You deserve to be heard. You deserve to be believed. And you deserve care that takes you seriously.
In your corner,
Perrie
Ask Perrie is Cactus Cancer Society’s advice column for the questions that young adult cancer doesn’t come with instructions for. Community members submit anonymous questions, and Perrie offers thoughtful guidance, perspective, and practical ideas for navigating life during and after cancer.
