Self-Advocacy Didn’t Come Naturally, But It’s A Skill I’m Determined To Learn

I am sitting in the examination room with the paper-thin gown on. My toes are freezing and it is hard for me to stay awake on the exam table. The exam is going well. But for me, the most important part is coming up next. The doctor asks, “Is there anything else bothering you?"

I tell him, “I’m sleepy all the time.” I try to explain—on weekends I sleep until 2 p.m. and still wake up exhausted. He asks a couple surface level questions and orders blood work to check my vitamin levels.

This exact kind of appointment with brief questions and no real solutions would repeat itself for many years by different doctors, different specialities, yet the outcome would remain the same. I’d leave every time feeling dismissed, unheard… and still sleepy.

Embarking on the self-advocacy journey

I did not push back, ask questions, or request additional testing. I knew something was not right with my body and that I needed help, but I accepted what the doctors told me because I trusted that my doctor is the expert. I did not advocate for myself because I did not know how.

But self-advocacy is a skill that can be learned. These are a few things that helped me find my voice.

Change how you see yourself in the room

Your doctor is not the only expert. You are an expert as well. You are a wonderfully made, original masterpiece, 1 of 1. You have a lifetime of unique experiences in your body. Your doctor may be considered an expert in medicine, but you are the only expert on your body! You and your doctor play an equally important role in your health journey. Your lived experience is just as valuable as the doctor’s education.

Clearly communicate your symptoms and how they affect your daily life. Share any information you believe will be helpful for the doctor to know. Asking questions is not challenging the doctor, although sometimes the situation may call for a respectful challenge - it is making sure you understand. If you feel rushed, request a follow up appointment and ask for additional time, or you can continue the conversation by email. It is important to become comfortable with having an active role in your care. This is a partnership.

Write it down

The night before an appointment, I had everything planned out in my head. I knew what I wanted to ask. I even practiced a response if I felt dismissed. But I would get in the exam room and forget all of it. I’d say, “I’m tired,” answer whatever questions came up, take whatever test was ordered, and leave. The truth is, “tired” is pretty vague. To a doctor, it can mean a hundred different things.

This is where writing things down can change everything. Try keeping a sleep log for a week or two before your appointment to help turn a vague feeling into something concrete and measurable.

Instead of saying, “I’m sleepy,” a sleep log can show patterns such as:

• Hit snooze on three alarms - took an hour just to get out of bed
• Needed a nap at 10am, 2pm, and 6pm just to function. Still felt terrible
• Slept 11 hours yet unable to go to work because staying awake felt impossible

Now you can present data to show that something more than the typical “I’m tired” is happening.

Assertive communication (even when it’s uncomfortable)

I did not walk into my exam that day expecting anything different. I said, “I’m sleepy all the time. I wake up just as tired as when I went to sleep.” Without even looking up from the computer, the doctor said, “Oh, did we test your hormones before?”

And something in me just… snapped. It wasn’t just the question—it was the way he asked it. Like we were just cycling through the same checklist again. Like this was routine. I said, “Yes. We’ve checked my hormones twice!!” And then, before I could even think about it, I exclaimed: “I’m not leaving until we figure this out.”

His head quickly shifted away from the computer. I was just as shocked by my tone as the doctor was. But in that moment, 25 years of frustration and exhaustion came out all at once.

You don’t have to “snap” to be heard, but you do have to be clear. You can do everything “right”—bring notes, track symptoms, ask questions—and still not be taken seriously sometimes. And when that happens, it’s okay to:

• Restate your concern
• Ask directly for next steps
• Request a referral or additional testing
• Or even seek a second opinion

Asking questions is not disrespectful, it's clarity. You deserve clarity. Being assertive is not rude, it is necessary.

And it is okay to respectfully challenge what’s being said if it does not align with your reality.
I once asked myself if I could live with choosing the doctors feelings over my wellbeing. No - I could not live with that.

From self-advocacy to IH diagnosis

I was finally diagnosed with idiopathic hypersomnia at 39 years old after 25 years of symptoms and not having the words—or the confidence—to push for answers.

Finding my voice did not happen overnight. But once I did, everything changed. If you are in that place right now—feeling unheard, unsure, or exhausted, always remember:

You are not alone.
Your experience is real.
Your voice matters.
And you deserve answers.