Learning how to navigate the healthcare system with a chronic illness is one thing. Learning how to advocate for yourself within it? That’s a whole different skill, and one I’ve had to develop the hard way. I live with both Type 1 Diabetes and Rheumatoid Arthritis, as well as other ailments like major nerve issues and Raynaud’s disease.
If you’ve ever sat in a waiting room rehearsing how to explain your pain just right, or left a doctor’s office wondering if you imagined your symptoms, then you already know: being your own advocate isn’t optional. It’s necessary. Here’s what I’ve learned.
1. Always Trust Your Gut
Years ago, I was dealing with strange nerve symptoms. Pain, tingling, and what felt like electric shocks on both sides of my body. It was unbearable and I started seeing a bunch of doctors to get to the bottom of it. They did countless tests, but there didn’t seem to be a clear answer.
One neurologist told me it might be Guillain-Barré syndrome. Another suspected a post-viral complication. But nothing was adding up. I knew something wasn’t right. I pushed for an MRI. Not because I was trying to play doctor, but because I was listening to my body, and trusting my instincts. That scan ended up revealing a disc pressing directly on my spinal cord. A neurosurgeon reviewed it two days later and rushed me in for surgery.
If I’d accepted what I was told and stayed quiet, I could’ve ended up with permanent nerve damage. So yes — your gut matters. Speak up. Ask for the scan. Request a second opinion. You know your body better than anyone.
2. You’re Not Being Difficult, You’re Being Proactive
I can’t count the number of times I’ve had to suggest treatments, question medication side effects, or gently steer a conversation with a doctor who wasn’t connecting the dots. There’s a myth that asking questions means you’re undermining their expertise. But good doctors welcome engaged patients.
I once read that 50% of doctors are annoyed by patients who do their own research, but that means that 50% are grateful for patient proactivity. I choose to focus on the latter. Bring your research. Keep a journal. Track symptoms. And don’t be afraid to say, “I’ve read about this option, could it be worth exploring?” Advocating for yourself doesn’t mean you don’t trust doctors. It means you’re an active participant in your own care. And frankly, you need to be.
I’m not a doctor, I’d never claim to be, but I’ve learned a lot through lived experience. If something I’ve picked up along the way can help someone else ask the right question or find a better option, then it’s worth sharing.
3. When the Answer Is “I Don’t Know”, That’s Still Valuable
Some of the best doctors I’ve worked with have been the ones who admitted when they didn’t know what was going on, and pointed me toward someone who might. When my eldest daughter was seriously ill after multiple tick bites, we saw a long line of doctors, many of whom gave up or guessed. But one specialist said, “I don’t know what this is, but I think I know someone who might.” That referral changed everything. Under the care of the new doc, she spent a month in hospital, got the right treatment, and is now living a full life.
A similar thing happened with one of my twins, who lives with endometriosis. She was in horrible pain. So bad that we were in and out of hospitals constantly. Despite clear evidence (including tissue removal that confirmed the diagnosis), multiple doctors tried to chalk it up to anxiety or push her into a pain management program meant for other conditions. I had to fight, over and over again, to make it clear: this wasn’t all in her head. Thankfully, we ended up seeing two top gynecologists, one at Children’s Hospital of Philadelphia and one at Johns Hopkins who validated my daughter’s experience, acknowledged that her pain was real, and offered appropriate care.
If you’re lucky enough to have a doctor who’s willing to say “I don’t know,” hang on to them and ask them for a list of other doctors you could see. If you don’t feel heard by one of your doctors? Keep searching.
4. There Are More Resources Than You Think
Advocacy isn’t just about getting the right diagnosis. It’s also about finding affordable care, medications, and support when the system isn’t built to help you. In the U.S., that often means navigating a maze of co-pay programs, manufacturer discounts, or patient assistance plans. I’ve found programs that cover medications worth thousands per month, just by digging and asking around.
And yes, it’s exhausting that we even have to do this when so many other countries have non-privatized healthcare systems. If you can’t afford a medication or an appointment, don’t give up. Ask about alternatives. Ask questions in online communities with others who share your conditions. And don’t stop until you find something. And always remember you don’t need to pay your hospital bills right away.
Ask your primary care physician, your pharmacist and all your specialists. Ask about financial aid or seek help from non-for-profits, like DollarFor.org. There’s also NeedyMeds.org, a dedicated nonprofit organization committed to improving access to affordable healthcare through discounted medication, free health clinics, coupons, rebates & co-pays. Or if you or a family member is diabetic, there’s also GetInsulin.org, which helps connect you with programs that make insulin more affordable.
5. Community Is Part of Advocacy Too
Sometimes the biggest shift comes not in the clinic, but online. Years ago, I volunteered as a mentor for newly diagnosed Type 1 patients and their families. Over time, I realised that while not everyone wanted a phone call from a stranger, many were eager to connect behind a screen. That’s when I started talking more openly on social media. Sharing the good, the bad, and the funny. Building a space where people could learn, vent, and feel less alone.
Advocacy isn’t just about speaking up for yourself. It’s about helping others feel safe to do the same. Whether it’s recommending a product you love, sharing a list of discount programs, or just reminding someone they’re not crazy — it all counts.
Speak Up, Even When It’s Hard
No one wants to spend their life arguing with insurance companies, decoding blood test results, or googling medication side effects at 2am. But when the system falls short, your voice matters more than ever. So if you’re feeling exhausted, dismissed, or like you’re navigating this maze alone…I see you. Keep asking the questions. Keep pushing for answers. Keep trusting that what you feel is real. You’re not being difficult. You’re being courageous. And you deserve care that listens, believes, and works for you.
