Looking back, I should have gotten more involved in my own healthcare when I turned 18. I should have asked more questions about health insurance coverage and learned some of this sooner. That’s on me.

But I’m not alone. Many young people entering the work force are, like me, navigating health systems for the first time, often without guidance from someone who’s already done it. 

I’m not writing this because I’ve figured it all out. I’m writing because I haven’t. My aim with this article is to help someone feel less alone and frustrated, and to save another young person a costly mistake and many hours. 

Plus, just starting a healthcare coverage conversation between young people and those who support them feels important. None of us will get this perfectly right. But we can learn out loud, and help each other along the way.

What I Wasn’t Ready For

Graduating from college was one of the most exciting “adulting” milestones of my life. I’d spent my whole life managing a severe tree nut allergy and asthma. I could recite my medical history; I knew my emergency protocols; I’d been to countless doctors’ appointments. My parents had done an extraordinary job preparing me for that. 

What they hadn’t prepared me for arrived in an envelope on August 31, 2025. It was a letter telling me my college insurance plan was ending.

My parents told me I would need to find a new plan through a broker. My first thought was: What’s a broker, and how am I supposed to negotiate health insurance? 

That question turned into a year-long crash course I did not sign up for, but certainly needed. 

Since my job doesn’t provide insurance, I had to find my own. At 23, I live in a city where doctors can book six to eight months out, and insurance networks change constantly. Plus, finding a specialist, who both accepts your plan and has a timely opening, can be a project in itself. 

My longtime allergist was no longer “in-network”, so I had to start over. I needed a new primary care physician (PCP) and a new allergist. As well, I needed a way to access an FDA-approved treatment that the longtime allergist and I had agreed was medically important.

Starting Xolair for food allergies made so much sense, especially with my work-related travel ahead. I attended educational sessions, came to understand how this monoclonal antibody works, and read up on the patient assistance and co-pay programs. 

What I didn’t fully understand was the process behind the treatment, and specifically, the cost. 

New Problems Daily

I eventually found an insurance plan, and I chose an HMO without fully comprehending that I needed a PCP before I could see any specialist. Finding a PCP with good recommendations took months; the earliest opening was more than half a year away. 

I finally got an appointment, but a paperwork technicality meant my first visit wasn’t initially covered. 

Picture this: I was sitting in the exam room with my insurance company on the phone. My new doctor stood beside me, both of us confused. The insurance representative told me the new doctor wasn’t actually in my network – something contradicted by both the insurance company’s own website and the doctor’s office. 

I eventually asked the doctor’s front desk to hand-write a letter confirming they accepted my plan. I wanted something that nobody could argue with later.

Then came the referral for my new local allergist. Weeks of silence turned into canceled appointments because the referral on file was incorrect. After gathering documents, going to the allergist’s office, and spending hours on the phone with my insurance company, I got it fixed. At least for a moment. I soon would learn the referral didn’t matter – because the underlying PCP paperwork issue still hadn’t been resolved.

I was back at square one. Every time I solved one problem, it revealed another one sitting behind it. I would hang up the phone thinking, finally. Then, the next morning, there would be a new call, a new cancellation. It was like an endless game of Whack-a-Mole.

I was frustrated and overwhelmed. And, honestly, I was embarrassed by how little I understood.

Healthcare Learning Gap

It wasn’t a question of whether I should get Xolair. I knew it should give me a helpful level of protection against allergic reactions. My struggle was navigating the systems required to receive this care. I spent hours staring at documents and websites and reading social media discussions.

The challenge was to decipher insurance language and figure out what I would be responsible for paying. I had a job, an education, my own insurance. Surely, I should be able to figure this out!

That’s when I began to understand the wide gap between knowing how to manage your health and knowing how to manage healthcare.

Young people are usually taught the former. We learn how to manage our health condition, our medications, recognize symptoms, and communicate with doctors. But we may not learn the vocabulary, financial considerations, and systems that determine whether we can actually access that care.

I know my asthma medications down to the dosage. I know my medical history dating back to my great-grandparents. Yet until recently, I couldn’t confidently explain an Explanation of Benefits, or even the specifics of my insurance plan.

That is the gap.

This doesn’t necessarily mean parents are failing their children. In fact, my experience is almost the opposite. My parents did such a good job managing my health that I rarely saw the work behind the scenes. They handled the scheduling, insurance calls, paperwork, and logistics, while I focused on managing my allergic conditions.

That was a gift. But it also meant I never had to watch how they did it.

Insurance Chat I Needed

If I could go back, I would ask my parents for one in-depth “Insurance 101” conversation before leaving college. I would want to understand what kind of plan I had, and what it covered. I’d request help to understand what terms like “deductible” and “coinsurance” actually mean. I would take notes on how to find an in-network provider, when I needed a referral, what to do if insurance denied something, and who to call when I had no idea what to do next. 

Plus, as I searched for a job, I should have asked what medical benefits were offered and what plans were available to me, if any. 

None of this would have made the healthcare system simple. But it would have made it less foreign. The hardest part of this experience was not learning the terminology. It was learning how to advocate for myself when I was already overwhelmed.

Learning to ‘Speak Insurance’

Getting knocked back that many times does provide lessons. For other young people who will soon face the health coverage challenge, let me amplify a few key things.

Clarity matters. It began to feel like the insurance system ran on confusion. So before calling, I learned to write down exactly what had happened and exactly what I needed. I made the most progress when I’d compartmentalized my thoughts and emotions before communicating.

Get it in writing. A verbal promise from a representative or receptionist can disappear the next time you call. A reference number or confirming email gives you something concrete to return to. 

Admit what you don’t know. The most useful conversation I had came after months of trying to convince myself that I understood the Xolair patient assistance program. Eventually, I called an assistance line and simply said, “I am completely lost. Please explain this to me like I’m new to it.” 

That honesty got me further than months of pretending that I was following. I met an openness and kindness that eased much of my confusion and stress. Finally, I’m almost sorted out. There is no shame in saying, “I don’t understand. Can you explain that again and more simply?”

Insurance Tools That Helped 

These resources helped me to understand healthcare and insurance coverage. I hope they will also help others to demystify the process.

• University of Texas Southwestern Medical Center’s practical checklist here. An excellent resource. 
• The Centers for Medicare & Medicaid Services’ guide to basics here. It walks through health plans, types of insurance, and costs.
• University of Oregon’s article on understanding health insurance here. It taught me what to ask, not just what things mean.
• National Association of Insurance Commissioners on using your health plan here. A comprehensive primer that I wish I’d had on Day One.
• Also useful: the federal Healthcare.gov’s glossary here. 

Learning to Advocate for Ourselves

I admit I’m still learning. But that is the point. Young adults shouldn’t have to wait until they are sitting in a doctor’s office, staring at an unexpected bill, or fighting with an insurance company to learn how their healthcare works. These conversations can start earlier, while parents or caregivers are still helping manage their children’s care.

For parents and caregivers, that might mean walking a young person through a medical bill, explaining why you chose a particular insurance plan, or having them sit in on an insurance call. It means gradually acquainting them with the parts of healthcare they don’t realize you are managing for them. 

For young people, it means asking questions before you urgently need the answers. Learn what kind of insurance you have and learn the language. And when something doesn’t make sense, say so. 

To the young people who have managed their own healthcare far longer than I have, you have knowledge the rest of us are only catching up on. Sharing that matters, since we grow faster when we learn from each other.

My experience taught me that healthcare independence is about more than caring for your body. It also means understanding the systems, plans, benefits, and financial decisions that determine how you receive that care. We have to advocate like it’s our job, because it is. 

I wish I had understood that before I graduated. But I also learned that not knowing is not the same as failing.

Ask questions. Write things down. And most importantly, don’t be afraid to advocate for yourself. You deserve to understand your own healthcare.

*Darya Malik is the pseudonym that our young adult contributor is using for privacy reasons.