The first time a doctor told me "it's probably just constipation/gas," I nodded and went home, thinking they must be right. A few doctors and many years later, I finally got my Crohn's diagnosis at the age of 17. That experience taught me something crucial: no one will advocate for your health as fiercely as you will.

Navigating the medical system with a chronic illness is exhausting. Some days, I barely have energy to get out of bed, let alone fight with insurance companies or explain my symptoms to the fifth new specialist. But I've learned – we all have to learn – that self-advocacy isn't optional when you're living with chronic or rare conditions.

With Rare Disease Day (February 28) just around the corner, I've been reflecting on how much the rare disease community has taught us about speaking up for ourselves. Whether you're dealing with something rare or a more common condition like mine, their hard-won wisdom can help us all get better care.

Why We HAVE to Advocate for Ourselves

I used to think doctors had all the answers. Just describe your symptoms and voilà – diagnosis and treatment plan! Then reality hit.

For so many of us with chronic conditions, the journey to diagnosis takes years, not days. I've talked with BeWell community members who saw 15+ doctors before someone finally connected the dots. Some rare disease patients wait an average of 7 years for accurate diagnosis.

And unfortunately, getting a diagnosis is often just the beginning of the battle. Many rare diseases have no FDA-approved treatments. Even for more common conditions, finding the right treatment combination can feel like trying to solve a puzzle with missing pieces.

The medical system simply isn't designed for complex, chronic cases. It's built for broken bones and strep throat – problems with clear causes and solutions. That's why we have to learn to navigate it differently.

1. Document EVERYTHING (Trust me on this one)

I learned this lesson the hard way. After my third hospitalization, a new doctor asked about previous treatments, and my foggy brain drew a complete blank. Now I document relentlessly:

• I keep a symptom journal (yes, I created the IBD Journal because I needed it myself) tracking not just major flares but daily patterns. On my worst days, it's sometimes just scribbled notes, but even that helps me spot trends.
• I have a spreadsheet of every medication I've tried, dosages, when I started/stopped, and why. When a doctor suggested trying something I'd failed on three years earlier, having this record saved me from repeating a miserable experience.
• I request copies of EVERY test result, even when they're "normal." Last year, I noticed a pattern in my "normal" labs that actually showed a slow-developing deficiency my doctors had missed.

These records aren't just for your doctors – they're for you. They validate your experience when you start questioning yourself (which happens to all of us).

2. Know Your Rights (Because Sometimes No One Tells You)

Nobody hands you a "Patient Rights Handbook" along with your diagnosis. I had no idea I could:

• Request my complete medical records (and that doctors legally have to provide them)
• Appeal insurance denials (and that many get overturned on first appeal)
• Ask for a patient advocate at most hospitals
• Refuse treatments or seek second opinions without being "discharged" from care

Understanding your insurance coverage is just as important. I spent months paying out-of-pocket for a medication before realizing it was covered under a different part of my plan. Learn from my mistake – review your benefits carefully and ask questions about anything confusing.

For those with rare or complex conditions, research patient assistance programs. Many pharmaceutical companies, nonprofits, and even hospitals have programs that can help cover costs insurance won't.

3. Persistence Isn't Being "Difficult" – It's Necessary

I used to worry about being labeled a "difficult patient." Now I wear that badge proudly if it means getting proper care.

When a gastroenterologist my pain as "unrelated" to my Crohn's (despite my experience), I didn't just accept it and went to the ER. I asked, "What else could be causing this pattern of symptoms?"

Sometimes persistence means:

• Calling repeatedly about referrals that mysteriously disappear
• Bringing research articles (I print them out rather than saying "I read online...")
• Switching doctors when you're consistently dismissed
• Simply saying "I don't feel comfortable leaving without understanding what's happening"

It's exhausting, but the alternative – suffering without answers – is worse.

4. Learn to "Speak Doctor"

I've found that how I communicate dramatically affects whether I'm taken seriously. When I say:

"I'm having the worst flare ever" → Often dismissed

vs.

"I'm experiencing 8/10 abdominal pain in my right lower quadrant, visible blood in stool 5-7 times daily, 10-pound weight loss in three weeks, and low-grade fever of 99.8-100.2 each evening" → Taken seriously

It shouldn't matter, but it does. I've learned to:

• Focus on specific symptoms rather than general complaints
• Quantify everything possible (frequency, duration, intensity)
• Describe exactly how symptoms impact daily function
• Avoid emotional language even when I'm feeling emotional

5. Never Go Alone (When Possible)

During my worst flare, brain fog made it impossible to process what doctors were telling me. My mom took notes, asked questions I forgot, and later helped me understand treatment options when I was thinking more clearly.

Your support person can:

• Remember details you might forget in the moment
• Provide confirmation of symptoms they've observed
• Take notes while you focus on the conversation
• Advocate when you're too tired to fight
• Simply hold your hand when news is tough

6. Find Your People

Online communities have been lifelines for me. When symptoms gave me issues at 2 AM, it was a Facebook group – not my doctor's after-hours line – that helped me figure out what was happening and how to manage until morning.

7. Second Opinions Are Your Right

Getting a second opinion doesn't mean you don't trust your doctor. It means you're being thorough about your health.

8. When Necessary, Speak Up Formally

I have not filed a formal complaint against my doctor yet. I was very close because a primary refused to order 1 test without ordering another. I was uncomfortable with the first test and they are supposed to work with you.

You Deserve to Be Heard

Living with chronic illness is hard enough without fighting to be believed. Some days, I'm too tired to advocate strongly. On those days, I show myself grace and try again tomorrow.

Your symptoms are real. Your struggles matter. Your voice deserves to be heard.

Keep documenting. Keep questioning. Keep advocating.

And on the days when you can't, be gentle with yourself. Rest, recover, and know that the chronic illness community – rare and common conditions alike – is standing with you, ready to help you find your voice again when you're ready.