How to be your best Advocate

On New Year’s Day I called my son to check on his Covid symptoms and prior nighttime events. He had said that his abdominal pain had worsened and was running a high fever.

I was met with a sick child on the other end of the line. I sat there confused by his symptoms and felt helpless. Clearly in pain and unable to physically reach him, I did a telemedicine visit. He had peritoneal symptoms which is a recipe for disaster.

He drove himself (yes, you read that right) to a North Shore ER. At the time, North Shore ER’s we’re at the height of Covid and not allowing visitors inside their waiting room.

I received special permission from North Shore (due to being a past employee) to stay with my son in the ER. The stay however had to be a short one.

They gave me 15 minutes. Theoretically, I had 15 minutes to soothe my sons fears, speak to the medical team about his plan, and ensure my sons pain was reduced from 10/10 to something a bit more comfortable. Of course, I did what any mom would do- I overstayed my welcome. It wasn’t until about an hour later that I was being escorted out by security.

In that one hour I was able to help get the appropriate pain medication, meet his trauma surgeons, interventional radiology, his nurse, PA, and GI specialist.

The trauma surgeon told me during that stay that he needed to be transported to Evanston for emergency surgery. He looked me in the eyes and said “if your son waited another day he would have gotten septic.” I knew what this word really meant.

This got me thinking…What could I have done if I wasn’t an ex employee? Would I have been able to be here? How do patients/families feel listened too when the medical team is running in and out of the room with varying degrees of information? How many people couldn’t get basic information regarding their loved ones?

This also proved to be a hard and fast lesson for me as I was now “on the outside” of the healthcare system that I was familiar with from the inside.

I needed to be the mom at that time, not the doctor. I was prepared to wear the hats. What I wasn’t prepared for was just how many I needed to wear.

I had him transferred to a pediatric floor because I knew these kids at least got ONE parent that was allowed to stay and sleep overnight. In hindsight, this was the best idea I had all year. The time I was able to spend with his care team and being his biggest cheerleader- I wouldn’t exchange that time for anything.

I’d like to offer you or your loved ones a few examples of what worked for me and some folks that I spoke with regarding their health care journeys over the past year. Hopefully this can offer you a few tools to use preparing for your next visit with your provider.

1) Do your research

Are your providers in network with my health plan? Do you think they’re a right fit for you or your family member?

During my sons hospitalization I fired half of his team. Do your homework and trust your gut-these things will guide you.

Don’t let comments saying your “Dr. Google” stop you from looking into your symptoms. We are only human — and sometimes were wrong. Your healthcare is a monologue and through shared decision making- the best decisions are made with you in mind.

Get informed. The best information that is also trustworthy come from sources (like .gov, .org, and .edu sites) can help you figure out what might be going on and which questions to ask at your appointment.

Then, if your doctor comes up with a conclusion that doesn’t make sense to you, you can ask them to clarify why they believe what they do, request tests to rule out other possibilities.

2) Go doctor shopping-(it’s OK to have a “cart”)

LaTasha Perkins, MD, a family physician in Washington, D.C., took it as a bad sign when her doctor failed to address that her pregnancy was high-risk due to her age. When she brought it up, her doctor dismissed her concerns and gave her a speedy rundown of potential issues.

“That was not enough for me, so I immediately decided to find a new doctor,” Perkins says. “I did my research and found a Black female physician that was a better fit for me.” Her advice: Know what you want and don’t want in a doctor.

With word of mouth and accessible info, you can learn quite a bit about doctors and their practices before you schedule an appointment. Visit their websites and check out their reviews. If the information you’re looking for isn’t there, email or call their office to get answers.

Request accommodations before your appointment

Tell your healthcare provider what you need from them and ask them to jot down your requests in your chart before you come in. Take it from Jenn Welch, a comedian and writer:

“For a few years now, I’ve given my doctors two pieces of information at the start of any appointment, and it’s made my experiences at the doctor’s so much better: I’m in recovery, so please don’t give me any narcotic painkillers, and I have PTSD from sexual trauma, so please let me know if you are going to touch me and talk me through whatever procedures you’re going to do.”

Whatever your needs, be open about them so you can be present and make the most of your appointment.

3) Bring notes, paper, and a pen

Antonio’s GI surgeon said his appendectomy’s tripled since Covid. I took note of his rationale and research journals he was citing for reference. He had something here.

Johannah Ruddy, a patient advocate and the co-author of Gut Feelings, spent about a decade battling severe GI symptoms due to a virus and visiting a slew of doctors before she finally found a specialist who diagnosed her with a functional gastrointestinal disorder.

“When you’re in a situation where your doctor is dismissing your symptoms, it’s easy to get flustered and blank on specific concerns,” she says.

The fix: Write it all down.

“A journal of your symptoms can hel or p doctors identify patterns or clues, especially if you have a more chronic or hard-to-diagnose symptom,” says Sharma. “It’s also a great way to maximize the little time you might have with a busy doctor.”

Don’t settle for treatment you’re not comfortable with

When Amy Motroni, a certified baby and toddler sleep consultant, was trying to conceive with her husband 4 years ago, an infertility doctor pressured her to start in vitro fertilization (IVF) right away. But she knew she had other treatment options, like adjusting her hormone levels with medication she’d taken in the past and tracking her cycle more closely.

When her doctor told her he didn’t think that would help, she continued to push for it until he agreed and wrote her a prescription. Three months later, Motroni was pregnant with her daughter.

“It could have been a fluke or a miracle, but I am so glad I advocated for myself and tried it my way first,” Motroni says. “If you have a gut instinct on something, speak up. Doctors know a lot, but they don’t know your body or your history as well as you do.”

4) Lean on your support system

Another important part of self-advocacy is surrounding yourself with people who can speak for you when you can’t.

“Someone can and should always step up,” says Eva Woolridge, an award-winning photographer and public speaker based in Brooklyn. When Woolridge ended up in the hospital with painful ovarian cysts, her roommate advocated for her throughout the day.

Woolridge’s dad was also a key player in ensuring that her doctor didn’t unnecessarily remove her ovary in light of a long history of doctors giving women of color hysterectomies without their consent.

“Beyond family and friends, connect with local and virtual community groups like churches, nonprofits, professional patient support and advocacy groups, and social workers for more help,” adds Lauren Freedman, a patient advocate and host of the podcast “Uninvisible Pod.”

5) Get that second (and third) opinion

By the time Hempstead was diagnosed with metastatic breast cancer, it had spread to her lungs and liver. Her doctor told her she wouldn’t live a year and refused to discuss or sign off on any clinical trials or experimental treatments. So, Hempstead fired that doctor and found a new one who provided her with high quality treatment options and rallied for her throughout her cancer journey.

“You have a right to have a doctor that is on your team and that will fight for you,” she says.

It might take more than a second, third, or fourth opinion to get the answers you need, but keep fighting for the care that you deserve. It’s OK to fire your provider. They weren’t meant for you journey

Whatever your needs, be open about them so you can be present and make the most of your appointment. At the end of the day, make sure your engaged with your provider, you feel connected, and empowered.