Advocating for Yourself in the Medical System When Living with Chronic Illness

Navigating the medical system as someone with chronic illness is tough, especially when you're still searching for answers. Having gone through more than 20 doctor appointments in 2024 alone, each visit can feel like a rollercoaster of emotions filled with hope, frustration, and sometimes even despair.

There’s been times where I’ve left appointments feeling completely defeated, wondering if I’d ever find relief leading to a couple breakdowns. Maybe it was because I didn’t receive clear next steps, maybe I wasn’t treated the best, or maybe I just didn’t get any closer to understanding my condition. There’s nothing worse than waiting months for a specialist appointment, only to walk away with nothing concrete.

However, over time, I learned how to advocate for myself better, and I want to share what I’ve learned along the way. Even if I don’t leave the doctor’s office with all the answers, I now know I’ve done everything I can to have a productive appointment.

Here are some strategies that have helped me make the most out of my medical visits.

1. Preparation is Key

It might seem obvious, but being prepared before a doctor's appointment is crucial. When dealing with complex symptoms and multiple specialists, you should make sure you have a clear plan. Start by asking yourself: What do I want to achieve with this visit? Are you looking for pain management options? A referral to another specialist? A specific test or imaging? These are the types of questions that can help guide your appointment.

Research conditions you suspect might be linked to your symptoms and familiarize yourself with the kinds of tests or treatments used to diagnose them. If there are specific tests or imaging you believe are necessary, make sure you know what they are before your appointment so you can bring them up.

Doctors, especially specialists, often have limited time, so it's important to field your questions ahead of time. I’ve found that having a focused agenda for the appointment allows you to use that precious time more wisely.

2. Finding the Right Specialist

At the beginning of my journey, I sought out a neurologist because most of my symptoms seemed neurological in nature. I figured going to the best-reviewed neurologist in my area would mean I'd receive quality care. Unfortunately, I learned the hard way that great reviews don't always mean a doctor is the right fit for your specific needs.

When looking for a specialist, it’s important to dig deeper than just ratings. Make sure the doctor is experienced in the condition you're targeting. A highly regarded doctor may not have the knowledge or expertise to address the complexities of your specific health issue, and this can lead to more frustration and wasted time.

3. Don’t Overwhelm Your Doctor with Too Much Detail

When you’ve been dealing with chronic illness for years, your story can get long and complicated. Early on, I made the mistake of trying to give every doctor a detailed recount of my entire medical history that spans back to 2013. But what I learned is that doctors don’t need to hear your entire life story, especially if you’re dealing with time constraints in a typical 30-minute appointment.

Instead, focus on your top symptoms and what is currently affecting your quality of life the most. What are the 3-5 worst symptoms? What is truly disabling you? This helps the doctor prioritize and focus on the most pressing issues.

In my case, I started creating a list of symptoms organized by system, neurological, cardiological, gastrointestinal, and others, so I wouldn’t forget anything important. At first, I used the Notes app on my phone, but I eventually switched to a printed symptom sheet that I could hand to the doctor. This helped speed up the process, making it easier for the doctor to get a clear picture of what was going on.

4. Approach Conversations with Doctors Strategically

It’s important to strike a balance between being informed and being overly assertive. You don’t want to come across too strong, especially when suggesting a potential diagnosis. If you jump into the appointment pushing for a specific condition to be investigated, there’s a risk you could be labeled a hypochondriac, and that can affect how seriously you're taken.

Instead, start by describing your symptoms and letting the doctor guide the conversation. If it seems like you're not on the same page, that’s when you can gently introduce the possibility of exploring a condition you’ve researched. This allows the doctor to feel like they are part of the diagnostic process and prevents them from feeling like you're trying to do their job for them.

5. Bring an Advocate When Needed

You may have heard that it's always a good idea to bring someone with you to your appointments, and this is especially true if you're visiting the ER. After a few visits to the ER from my condition, I’ve noticed that when you have someone with you, doctors tend to take you more seriously, are less dismissive, and seem to dig deeper for answers.

While I don’t always bring someone with me to regular appointments, I think it’s a good idea for those who feel they need extra support. Having someone there can help ensure that you’re treated with more respect and can also help you remember details about the appointment that you might forget later.

6. Be Mindful of Mental Health Discussions

Chronic illness often brings anxiety and depression alongside it. It’s completely normal to feel a sense of hopelessness when your body is no longer cooperating with you, and this can take a serious toll on your mental health. Unfortunately, when doctors don’t have a clear answer for your physical symptoms, mental health can quickly become the default explanation.

For this reason, I tend to not bring up my mental health symptoms during appointments unless they are truly the main focus. I just don’t want doctors to dismiss my physical concerns and assume everything is just "in my head," a common theme for those suffering with chronic illness. However, if you do need help with your mental health, there is absolutely no shame in seeking treatment for that. It’s all part of the bigger picture of healing.

7. Don’t Be Afraid to Push for Tests

There have been times when I’ve gone into an appointment with a specific test or imaging in mind, only to have the doctor dismiss it as unnecessary. In those cases, I’ve learned to ask the doctor to document that they are denying the test or imaging in their notes. This simple request often makes them reconsider, and they end up ordering the test after all.

If you’re not able to get the test or referral you need, ask the doctor if they can recommend someone else in their network who might be better suited to explore that avenue. Don’t hesitate to switch specialists if necessary. While it can be exhausting to go from one doctor to another, finding the right team is worth the effort.

8. Build a Solid Team of Doctors

I feel fortunate that I’ve now built a decent team of doctors who are willing to order the tests I inquire about and communicate with each other effectively. This has taken time and persistence, but it’s essential when you’re dealing with a condition that affects multiple systems.

A good primary care physician (PCP) can be invaluable in this process. They can help coordinate your care between specialists and advocate for you when you need certain tests or referrals. Finding a PCP who is not only knowledgeable but also a good communicator is a game-changer.

9. Keep Organized Records of Everything

In today’s digital age, it’s much easier to keep track of your medical records through hospital MyChart apps, but I still make it a point to keep physical copies of everything. This is especially important when it comes to imaging. I always request copies of the discs for any imaging I’ve had done because I know there’s a good chance another specialist will want to see them. It might be needed for claims and disability information as well.

Keeping detailed records ensures that you’re always prepared, no matter which doctor or specialist you’re seeing next. It also helps prevent unnecessary delays in your care.

Final Thoughts

Living with chronic illness is challenging enough without having to navigate the often-complicated medical system. But by advocating for yourself, preparing for appointments, and being strategic in your approach, you can make the process a little easier and more productive.

While I’m still searching for definitive answers, I’ve learned that advocating for yourself is one of the most important tools you can have in your chronic illness journey. You know your body better than anyone, and it’s up to you to ensure that you’re heard, respected, and taken seriously throughout the process.