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Navigating Healthcare in the USA

What do you call a med student who graduated at the bottom of their class? -a doctor!

Ok, maybe a little harsh, but the reality is that not all doctors are effective, aware of their limitations, or care. Some simply lack empathy. You should feel understood, respected and if they do their job decently they will have explained things enough so they make sense to you. If they dismiss your symptoms, especially as stress or anxiety without doing thorough testing and considering other causes- this is awful care, and happens much more frequently to women. Get a new doctor ASAP! This goes for doctors at hospitals, should you ever find yourself in one- know you can “fire” the doctor (hospitalist) you’ve been given and ask for a new one– it’s an important patient right most people aren’t aware of.

Patient Recommended Doctors

Detailed doctor lists and referrals are found at support groups. They are gems. Check out support groups like California POTSies (for the California area), and My Crazy Life with Mast Cell Disorder.

Asking around on support groups is one of the best ways to find a great specialist or GP. Post on Facebook to see if anyone has a provider they love in your area. Check any recommendations against online reviews. Going to a doctor is a lot of time, money and energy, so being thorough beforehand is worth the effort.

Primary Care

It’s amazing how many people don’t have a primary care physician, and if they do, don’t have a decent one. A good one is invaluable. Go to your health insurance website, and they should have a link to search for providers in your area. You’ll be wanting to find an “internal medicine” doctor, otherwise known as “primary care” or a “general practitioner.” If you prefer a woman for a doctor, they should have that as a filter option as well. Anyway, you’ll get a list of doctors. Then take each doctor’s name and search for it in Google along with the word “healthgrades.” Healthgrades is a website where people can rate their doctors. For some reason Google seems to have a better search than Healthgrades itself. Not always a lot of votes, but I find in general they reflect pretty accurately on the quality of doctor. Also Google ratings and Yelp can be good to double check. Go through the list until you find a couple doctors that rate well, then call to make sure they’re taking new patients… then make an appointment!

Having a good primary doctor is a huge resource. Most do email/messaging now through online portals, so if you have a quick question, need to update them, get the flu, headaches or something else annoying pop up, you can reach them directly and quickly without needing an appointment! They’ll have you covered.


Get the best you can afford. Traditionally the easiest way to get access to the specialists you need is with PPO (preferred provider organization) insurance. Specialists for POTS & MCAS are still few and far between, and the best are not found in standard HMO (health maintenance organization) networks. HMO’s like Kaiser may allow you access to an out-of-network specialist generally after lots of time, persistence and struggle. Beyond the patient right to a second opinion, your insurance needs to cover an outside specialist if it’s demonstrated that no one in their plan has the expertise you need. I have yet to hear a story about how easy it was to get adequate care for these conditions through a traditional HMO plan. Pre diagnosis, but still in decent enough health I had Kaiser and still racked up a handful of infuriating stories. Last year I had one month on a very good Blue Cross HMO and racked up huge bills because I was desperate to go back to my decent doctors after a huge relapse from mold exposure. Bad timing with average coverage. If you have doctors you love and can access them through an HMO, then that may actually be a great option. Otherwise, the extra cost of the PPO (say through your employer) pales compared to the time and suffering you’ll likely save yourself, especially if you’re currently struggling to find doctors, diagnoses and treatment plans. As I experienced last year, even if you’re doing well, a relapse or attack can happen and you’ll want to have easy access and coverage for those specialists and facilities that can actually help you.

Sadly, it’s still the Wild West here in America. Though some very basic rights are thankfully in place, the middle class person is still left fending for himself in an adversarial, tenuous and labyrinthine healthcare system. If you’re struggling with insurance issues there are organizations that offer help getting care and resolving coverage & billing issues like Health Consumer Alliance.


Take advantage if a FSA (flexible spending account) is available through an employer! You’ll get access to your money pre-tax for medical expenses, so depending on your tax bracket, you can save up to around 30%.

Labwork and Testing

As far as getting medical testing done, good chance your insurance provider website has a tool that gives you cost estimates before you get common tests done. If you have a PPO, and a doctor wants you to get bloodwork done, you can ask for them to print out the order so you can take it to wherever you like. For other tests like imaging and endoscopies, you can research to find an affordable facility, then have your doctor send the order there. In general the most affordable bloodwork is going to be at places like LabCorp (decent) or Quest. I personally avoid certain labs like a nearby Quest, because I’ve found staff minimally trained, not even knowing the names of the labs they’re drawing and lacking the physical finesse, making the blood draw very uncomfortable. I go through Scripps Clinic now, where I’ve found staff and prices about the same as a LabCorp and the needle sticks gentle. Other places like my local university, UCSD, bloodwork can be crazy more expensive, so check first! Doctors generally send you to wherever is easy for them. Also to save time, either try going late in the day to get your blood drawn, or make an appointment. A lot of popular labwork is done in the morning that’s why these labs are typically busy early in the day.

Staying in a Medical Network

Beyond staying in your health insurance network, it’s really convenient to stay in a particular medical provider network where you can, like I do with Scripps here. If I go to their urgent care, they can pull up my chart and notes from all my doctors and specialists. They’ll instantly know my conditions, meds, have recent tests, and the rest of my medical history. My primary care doctor can quickly see what happens at the urgent care, and at the specialists’. This improves your care, because your health data is organized in their shared database, making your health data accurate and easy for them to incorporate. You don’t have to go around sending tests, updates and files among offices yourself.

Urgent Care & Emergency Rooms

Emergency room visits, especially with a PPO, are much more expensive. HMO plans might only cost your copay, but even just a simple visit where you only get IV fluids, a PPO plan can cost $1000’s if you haven’t met your deductible (happened to me). Know the good 24-hour urgent cares in your areas, and know their capabilities. The one at Scripps here can do bloodwork, IV fluids and imaging. For my needs, it might as well be an emergency room (ER). I’ll go there for practically anything. Some urgent cares can’t do labwork or fluids and are like going to a basic doctor’s office, making them only adequate for simpler issues like colds or a UTI. ER’s are best to avoid unless it’s very serious of course. The wait at an urgent care is most likely going to be much faster as well. Also, for tricky insurance purposes, know that some insurance will process your urgent care visit as an expensive ER visit if the urgent care is associated or attached to an ER. I had this frustrating experience with my PPO plan when visiting NYU’s urgent care. Being prepared for accidents and emergencies is incredibly valuable even for your healthy family members.

Financial Assistance/Debt Relief

This is not just for poor or destitute people. If you get a massive medical bill, as in a hospital or medical group, call up the billing department and ask to apply for financial assistance. They may be resistant and deflect to payment options, but keep repeating yourself. Many people aren’t aware that this option even exists, and they get stuck with massive debt and may even end up ruining their credit. Multiple times, despite my decent career and income, I have qualified for financial assistance and debt relief. That is because medical bills can be huge compared to your income. If you’re put on temporary disability, that may also help you qualify because your current income will drop drastically.

Out of Network Doctors at an In-Network Hospital?

Also, if you have gone to a hospital your insurance lists as “in-network” and received bills for doctors that treated you there claiming to be “out-of-network,” call your insurance. Speak with you insurance billing department and tell them you went specifically to a hospital listed as in-network, yet are being charged for doctors “out-of-network” and that this seems fraudulent. I added that I didn’t understand how this was legal. Ask for a supervisor if need be and repeat how this seems fraudulent and frankly illegal. For me, these seemed to be trigger words to get me to a powerful insurance employee who was able to somehow all of a sudden get all of these many doctors trying to charge me thousands of dollars covered by the insurance plan.

Long Distance Travel to Care

If you need to fly to get to a specialist, you might be able to get free flights to relieve the financial burden. One fellow patient used Mercy Medical Angels more than once for free flights to get to her appointments! Mercy Medical also has a Patient Travel Referral Program to match patients with other charitable transportation options.

Southwest Airlines has a commendable medical transportation grant program with a large list of non-profit hospitals and medical transportation organizations (including Mercy Medical Angels). The hospital or organization you need to go to might be listed, and reach them directly at their Social Work, Travel/Concierge Service, or Patient Assistance Department.

Local Travel to Care & Medical Assistance Programs

Sometimes you need help, but don’t have a friend or family member available. You might feel well enough to take an uber or lyft yourself, but maybe you can’t afford it. Dial 211 or search online for 211 and your state. You can find local programs that offer free non-emergency medical transport (NEMT) to help get you to and from doctors appointments when you don’t have someone available to help. Your medical provider might offer transport to their facilities. There you can also find services for caregiving if you need help with basic household needs. You might also want to reach local churches and non-profits for assistance programs in your area. Many services like Meal on Wheels are targeted towards seniors, however you should qualify for them if you’re disabled and meet any stated income requirements.

Prescription Programs

Even with insurance, medications can be costly and a huge financial burden. See some prescription assistance programs listed at Dysautonomia International.

Mental Health & Therapy

Thankfully therapy is less stigmatized than ever before, and is changing people’s lives. Life is challenging, even for healthy people. In my opinion everyone should have a therapist available to them like they have a general practitioner. People expect to have physical troubles, and they should expect to have emotional ones too- big or small. People have struggles at work, with family members, and we all experience loss. It’s an inevitable part of life.

You can find a therapist the same way I talked about finding a good doctor. I generally find the better professionals are not at larger mental health centers or groups, but are in very small or independent “practices.” My recent therapist changed my life in so many ways. A good one feels like you’re talking to a trusted advisor, NOT like you’re talking to a wall or just yourself. You won’t feel observed, instead you’ll feel advised or counseled. I think that’s the biggest way to tell if you found a good one. And beyond that it’s also a personal fit, so if they seem really nice, but you don’t feel like they totally “get” you or if you find it hard to open up or connect- try another one! A good one will probably tell you that too. My first therapist in college did, and the next therapist I was assigned was a fantastic fit.

If you find a good therapist that is a little far for regular visits, or if you have a hard time leaving the house online therapy sessions are a fantastic option. Maybe you go in for the first session to establish a rapport. There’s flexibility! Most therapists are willing to do sessions over something like or even Google hangouts, which surprisingly does meet privacy requirements.

Many jobs have a program called EAP (Employee Assistance Program), which can be a decent place to start. They can help you find a therapist to talk to quickly and the program generally covers the cost of a limited number of sessions per issue. Thanks to Obamacare changes, insurance cannot limit the number of therapy sessions they cover in a year as they once did. If you need it, you should be able to see a therapist every week throughout the entire year. Since dealing with insurance can be a costly headache, many excellent established therapists and counselors don’t accept insurance at all, so you would be paying their full hourly rate out-of-pocket. However, you should be able to find a solid therapist in your area that will take your insurance.

Published in Treatment & Help


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