Advocating for Yourself With Chronic Illness: Finding Your Role in Healing

What does it look like to help others while also helping ourselves?

Global Genes is a nonprofit organization that supports people living with rare diseases. They offer meaningful resources, but one initiative in particular is what drew me in: pairing someone with a rare disease with a new physician, with the goal of helping that physician learn how to better approach, treat, and truly listen to patients with complex conditions early in their career. This kind of rare disease advocacy is long overdue.

Anyone living with chronic illness knows how exhausting it can be to manage a confusing diagnosis. That frustration deepens when the person responsible for your care is rushed, unprepared, or lacking compassion. Doctor–patient communication matters more than most people realize.

Because I could relate so deeply, I volunteered to be matched with a medical student. I wanted to play a small role in improving how providers understand patients like us. The experience came at a critical time in my life and in the life of someone I loved deeply—someone who passed away unexpectedly at 22 due to medical negligence. That loss still lives with me.

The medical student I worked with was incredible. Compassionate. Curious. Motivated to do better. He was genuinely shaken by how consistent the negative experiences were among rare disease patients. Hearing that mattered.

As important as it is to help change the system, we also have to support ourselves. One thing that stood out during a Zoom discussion was how often patients feel unheard or rushed during appointments. That experience is real. I live it, too. But it raised an important question: what can we do to advocate for ourselves more effectively while navigating healthcare with chronic illness?

Preparation matters.

A physician’s time is limited, just like ours. When both sides are prepared, appointments tend to go better. Here are a few practical ways to take an active role in your healing:

1. Make a short list of key concerns using bullet points.

2. If allowed, send questions to the nurse ahead of time.

3. Keep a simple, organized medical journal.

4. Prioritize concerns, knowing not everything will be addressed in one visit.

5. Use your patient portal consistently.

6. Show your provider that you are engaged in your own care.

That last point is personal for me. I’ve spoken with many people living with chronic illness who feel understandably discouraged. Sometimes helpful suggestions are met with “I can’t,” and I get it—limitations are real. But framing responses around what is possible can change the tone of the conversation.

If a provider suggests running two miles a day and your condition makes that impossible, it’s okay to say: “Running isn’t an option for me, but I can work on my diet and start walking more.” That shift keeps the door open. It reinforces patient self-advocacy and shows willingness, even within constraints.

These practices won’t fix every provider or every system. But they can help create a better experience for you. And if you’re still not being heard, it may be time to seek a new doctor—even though that process is draining.

I also appreciated the focus on self-autonomy and emotional care. Living with chronic pain and rare conditions is not just physical—it’s mental and emotional, too.

Journal your hopes. Write down what is good, what you still have, what you can do.

Name your fears. List your needs. Give yourself permission to take up space.

♥️ Whatever you do...never give up!